Little Man Has Doc's Heart

159620_laBonded by baseball, Halladay and McFadyen family hook up for a weekend to remember in Philadelphia

BOB ELLIOTT, TORONTO SUN

FIRST POSTED: | UPDATED: 

PHILADELPHIA – As usual when batting practice ended on Saturday the Philadelphia Phillies headed for the first base dugout.

Some couldn’t wait to get inside to the air-conditioned clubhouse.

Others headed to the video room for one final look at Jays pitcher Shaun Marcum and others wanted a Red Bull.

“You could see Roy Halladay walking across the infield, deep in his mode of concentration, and then he saw Isaac,” said Andrew McFadyen. “Roy’s face lit up … and so did Isaac’s.”

For the next 15 minutes Halladay stayed on the field with Isaac, 5, his younger brother Gabriel, four, and parents Ellen Buck-McFadyen and Andrew McFadyen, of Campbellford, Ont.

Halladay, his wife Brandy, and young Isaac have been pals for a few years since Isaac arrived at the Rogers Centre in Doc’s Box one weekend afternoon from Sick Kid’s Hospital.

You know about Halladay, his wins, his strikeouts, his complete game and bringing groups to Rogers Centre and Citizens Bank Park,

You may not know a lot about brave young Isaac.

At 18 months, in November of 2005, he was diagnosed with Maroteaux-Lamy Syndrome, or MPS VI. The unfair disease is caused by an enzyme deficiency, which stunts growth and causes joints to stiffen and heart valves to fail.

Isaac’s health is as good as it has ever been up to this point, according to his father, who says Isaac’s growth is progressing at a slower pace, but he has more mobility in his shoulders of late.

Treatments at Sick Kids, where he gets a weekly enzyme-replacement therapy, were moved up because of the G-20 Summit this past week. The treatments are Isaac’s lifeboat until a cure for his disease is discovered.

Isaac gets a synthetic version of the enzyme lacking in his blood.

The door-to-door process from Campbellford takes about 12 hours and comes in at a cost of about $500,000 to

1 million a year. The McFayden family credits Christina Blizzard of Sun for helping get government approval.

“I can’t speak more highly of Roy and Brandy,” Andrew McFadyen said from his downtown Philadelphia hotel.

“They are class acts, kind and caring. They truly go out of their way to make the world a better place for those around them. They use their position to give back and I think that is what makes the Halladays so amazing.”

The McFadyens arrived in town at 1 a.m. Saturday making the 81/2 hour drive from Kingston where McFayden teaches, missing Halladay’s seven scoreless innings for the win Friday. McFadyen was on a class trip Friday and could not get away earlier to get to Philadelphia in time for Halladay’s start.

And early Sunday morn they were on the road home.

In the Phillies clubhouse on Sunday, Halladay walked past us with the purposeful stride.

“Do you have a minute?”

“Nope, I’m way behind, running late, sorry, no time,” Halladay said over his left shoulder without breaking stride.

“Ah, it’s about Isaac.”

Halladay put on the breaks like a runner leading off first who sees a line drive at the shortstop’s head.

“It was nice to see him for the first time since last season and he looked great, which is a real good sign,” Halladay said. “He’s always been energetic, he told me he was a better pitcher than I am, but he needs some more practice.”

Brandy Halladay set up the tickets and the on-field passes for the McFaydens. They were on the field for 45 minutes and centre fielder Shane Victorino stopped by encouraging Isaac to heave balls on to the field during batting practice.

“Isaac gave me a high-five, as always, and stung my hand,” Halladay said. “Like last year when he came out of the first base dugout (at the Rogers Centre) over to our dugout.”

In 2008, Halladay was presented the fifth annual George Gross/Toronto Sun Sportsperson of the Year – the first pro athlete to win the honour. Legendary former editor Lou Clancy presented Halladay a $1,000 cheque last April before the Jays played the Detroit Tigers.

Halladay donated the cheque to the Isaac Foundation (theIsaacfoundation.com) and matched it himself.

After a big on-field hug on Saturday, Halladay squatted.

Isaac pitched to the gangly catcher in front of the Phillies dugout Saturday afternoon. That was Isaac’s favourite part of the visit, according to his father.

Isaac presented Halladay with his custom-made Isaac Foundation softball jersey with No. 32 on the back, the number Halladay wore with the Jays. When Isaac realized Halladay was wearing

No. 34 with the Phillies, he told his favourite player: “Just add two more.”

Isaac and Gabriel watched Halladay open and then read the card they made for him at the Sick Kids last week …

It was Halladay pitching … an orange.

After Halladay’s perfect game 1-0 win over the Florida Marlins, his e-mail in box was full with well wishers and people sending notes of congrats.

One e-mail stood out:

“Congratulations, enjoy everything that’s coming to you this evening.

From the McFaydens.”

Halladay answered the e-mail.

“We’ve been in contact with Brandy all the time and she often sends notes to Roy,” said McFayden, who had seats behind the Phillies dugout. “We don’t get to see him on TV for the Jays any more, but we listen to games on MLB network.”

Halladay also keeps in touch with Sean Clayton, who he met through the Make A Wish Foundation.

The Jays beat the Phillies 5-1 Saturday in the McFayden’s lone game in Phillie.

“Mostly, Isaac was impressed how hot it was during the game,” McFayden said.

While McFadyen lives in Campbellford, he teaches at Winston Churchill Public School in Kingston. In the efforts of full disclosure, it is a school we attended for two years and never once skipped class: Kindergarten (Miss Preston) and Grade 8

(Mr. Neil Joynt).

“Brandy and I believe in the Foundation,” Halladay said. “There is not really a lot of awareness for the illness.”

Deep friendship

In April last year we remember asking Isaac his favourite player at the St. Louis Bar and Grill before Isaac made his way across to the Rogers Centre.

Isaac stood tall, threw his neck back and as if howling at the moon, to let out a loud yell:

“Royyyy Holl-A-DAY!”

However, you pronounce the pitcher’s name, Halliday.

Halladay and Isaac have a deep friendship unchanged by the either the colour of a uniform or a city.

bob.elliott@sunmedia.ca

 

Little Man Has Doc’s Heart

159620_laBonded by baseball, Halladay and McFadyen family hook up for a weekend to remember in Philadelphia

BOB ELLIOTT, TORONTO SUN

FIRST POSTED: | UPDATED: 

PHILADELPHIA – As usual when batting practice ended on Saturday the Philadelphia Phillies headed for the first base dugout.

Some couldn’t wait to get inside to the air-conditioned clubhouse.

Others headed to the video room for one final look at Jays pitcher Shaun Marcum and others wanted a Red Bull.

“You could see Roy Halladay walking across the infield, deep in his mode of concentration, and then he saw Isaac,” said Andrew McFadyen. “Roy’s face lit up … and so did Isaac’s.”

For the next 15 minutes Halladay stayed on the field with Isaac, 5, his younger brother Gabriel, four, and parents Ellen Buck-McFadyen and Andrew McFadyen, of Campbellford, Ont.

Halladay, his wife Brandy, and young Isaac have been pals for a few years since Isaac arrived at the Rogers Centre in Doc’s Box one weekend afternoon from Sick Kid’s Hospital.

You know about Halladay, his wins, his strikeouts, his complete game and bringing groups to Rogers Centre and Citizens Bank Park,

You may not know a lot about brave young Isaac.

At 18 months, in November of 2005, he was diagnosed with Maroteaux-Lamy Syndrome, or MPS VI. The unfair disease is caused by an enzyme deficiency, which stunts growth and causes joints to stiffen and heart valves to fail.

Isaac’s health is as good as it has ever been up to this point, according to his father, who says Isaac’s growth is progressing at a slower pace, but he has more mobility in his shoulders of late.

Treatments at Sick Kids, where he gets a weekly enzyme-replacement therapy, were moved up because of the G-20 Summit this past week. The treatments are Isaac’s lifeboat until a cure for his disease is discovered.

Isaac gets a synthetic version of the enzyme lacking in his blood.

The door-to-door process from Campbellford takes about 12 hours and comes in at a cost of about $500,000 to

1 million a year. The McFayden family credits Christina Blizzard of Sun for helping get government approval.

“I can’t speak more highly of Roy and Brandy,” Andrew McFadyen said from his downtown Philadelphia hotel.

“They are class acts, kind and caring. They truly go out of their way to make the world a better place for those around them. They use their position to give back and I think that is what makes the Halladays so amazing.”

The McFadyens arrived in town at 1 a.m. Saturday making the 81/2 hour drive from Kingston where McFayden teaches, missing Halladay’s seven scoreless innings for the win Friday. McFadyen was on a class trip Friday and could not get away earlier to get to Philadelphia in time for Halladay’s start.

And early Sunday morn they were on the road home.

In the Phillies clubhouse on Sunday, Halladay walked past us with the purposeful stride.

“Do you have a minute?”

“Nope, I’m way behind, running late, sorry, no time,” Halladay said over his left shoulder without breaking stride.

“Ah, it’s about Isaac.”

Halladay put on the breaks like a runner leading off first who sees a line drive at the shortstop’s head.

“It was nice to see him for the first time since last season and he looked great, which is a real good sign,” Halladay said. “He’s always been energetic, he told me he was a better pitcher than I am, but he needs some more practice.”

Brandy Halladay set up the tickets and the on-field passes for the McFaydens. They were on the field for 45 minutes and centre fielder Shane Victorino stopped by encouraging Isaac to heave balls on to the field during batting practice.

“Isaac gave me a high-five, as always, and stung my hand,” Halladay said. “Like last year when he came out of the first base dugout (at the Rogers Centre) over to our dugout.”

In 2008, Halladay was presented the fifth annual George Gross/Toronto Sun Sportsperson of the Year – the first pro athlete to win the honour. Legendary former editor Lou Clancy presented Halladay a $1,000 cheque last April before the Jays played the Detroit Tigers.

Halladay donated the cheque to the Isaac Foundation (theIsaacfoundation.com) and matched it himself.

After a big on-field hug on Saturday, Halladay squatted.

Isaac pitched to the gangly catcher in front of the Phillies dugout Saturday afternoon. That was Isaac’s favourite part of the visit, according to his father.

Isaac presented Halladay with his custom-made Isaac Foundation softball jersey with No. 32 on the back, the number Halladay wore with the Jays. When Isaac realized Halladay was wearing

No. 34 with the Phillies, he told his favourite player: “Just add two more.”

Isaac and Gabriel watched Halladay open and then read the card they made for him at the Sick Kids last week …

It was Halladay pitching … an orange.

After Halladay’s perfect game 1-0 win over the Florida Marlins, his e-mail in box was full with well wishers and people sending notes of congrats.

One e-mail stood out:

“Congratulations, enjoy everything that’s coming to you this evening.

From the McFaydens.”

Halladay answered the e-mail.

“We’ve been in contact with Brandy all the time and she often sends notes to Roy,” said McFayden, who had seats behind the Phillies dugout. “We don’t get to see him on TV for the Jays any more, but we listen to games on MLB network.”

Halladay also keeps in touch with Sean Clayton, who he met through the Make A Wish Foundation.

The Jays beat the Phillies 5-1 Saturday in the McFayden’s lone game in Phillie.

“Mostly, Isaac was impressed how hot it was during the game,” McFayden said.

While McFadyen lives in Campbellford, he teaches at Winston Churchill Public School in Kingston. In the efforts of full disclosure, it is a school we attended for two years and never once skipped class: Kindergarten (Miss Preston) and Grade 8

(Mr. Neil Joynt).

“Brandy and I believe in the Foundation,” Halladay said. “There is not really a lot of awareness for the illness.”

Deep friendship

In April last year we remember asking Isaac his favourite player at the St. Louis Bar and Grill before Isaac made his way across to the Rogers Centre.

Isaac stood tall, threw his neck back and as if howling at the moon, to let out a loud yell:

“Royyyy Holl-A-DAY!”

However, you pronounce the pitcher’s name, Halliday.

Halladay and Isaac have a deep friendship unchanged by the either the colour of a uniform or a city.

bob.elliott@sunmedia.ca

 

John Mayer Isn't Quite The Jerk He Seems To Be

020310_john_mayer_544_spl132289_004Tue, February 16, 2010 7:45pm EDT by 

Despite his recent derogatory remarks, John Mayer takes the time to reach out to a sick child and family in need. Do you think he deserves a break from all the criticism?

John Mayer has gotten a lot of deserved flack lately for dropping the n-word and making un-gentlemanly remarks about ex-girlfriends Jennifer Aniston and Jessica Simpson in Playboymagazine, but the loose-lipped rocker does have one fan, who says John is a stand-up guy for spending time with his ailing son, Limelife reports.

Five-year-old Isaac McFadyen is battling a rare enzyme deficiency known as MPS VI, and for the past two years, John, 32, has been working intimately with Isaac and his charity, the Isaac Foundation, to find a cure for the disease.

Isaac’s dad, Andrew, is now defending the rocker via his blog. “I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around — ever. But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved,” Andrew wrote Feb. 11.

He added, “A few minutes ago I asked Isaac to tell me three words he would use to describe John. He responded ‘Nice, friendable, and loveable.’ Print that bloggers, and give John his fair shake.”

It’s easy to see why Andrew and Isaac are fans of Mayer the Player: they see a different side of him from the rest of the world (call it his sensitive side, if you will). John not only chatted with Isaac backstage before his Toronto concert, but gave the sick 5-year-old a Valentine’s Day show and an on-stage shout-out (see video).

After watching the video, even we have to admit seeing John vulnerable was pretty endearing. Even though he says outrageously offensive things and seems to have no filter, do you think he’s a good guy at heart? Does watching this video make you — sort of — forgive him?

John Mayer Isn’t Quite The Jerk He Seems To Be

020310_john_mayer_544_spl132289_004Tue, February 16, 2010 7:45pm EDT by 

Despite his recent derogatory remarks, John Mayer takes the time to reach out to a sick child and family in need. Do you think he deserves a break from all the criticism?

John Mayer has gotten a lot of deserved flack lately for dropping the n-word and making un-gentlemanly remarks about ex-girlfriends Jennifer Aniston and Jessica Simpson in Playboymagazine, but the loose-lipped rocker does have one fan, who says John is a stand-up guy for spending time with his ailing son, Limelife reports.

Five-year-old Isaac McFadyen is battling a rare enzyme deficiency known as MPS VI, and for the past two years, John, 32, has been working intimately with Isaac and his charity, the Isaac Foundation, to find a cure for the disease.

Isaac’s dad, Andrew, is now defending the rocker via his blog. “I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around — ever. But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved,” Andrew wrote Feb. 11.

He added, “A few minutes ago I asked Isaac to tell me three words he would use to describe John. He responded ‘Nice, friendable, and loveable.’ Print that bloggers, and give John his fair shake.”

It’s easy to see why Andrew and Isaac are fans of Mayer the Player: they see a different side of him from the rest of the world (call it his sensitive side, if you will). John not only chatted with Isaac backstage before his Toronto concert, but gave the sick 5-year-old a Valentine’s Day show and an on-stage shout-out (see video).

After watching the video, even we have to admit seeing John vulnerable was pretty endearing. Even though he says outrageously offensive things and seems to have no filter, do you think he’s a good guy at heart? Does watching this video make you — sort of — forgive him?

John Mayer Receives Support From Charity

 

Isaac Foundation blogs in defense of the singer, while Vivid Entertainment offers him a screenwriting gig.

 

MTV.com – By Jocelyn Vena (@jocelyn1212

281x211Last week, John Mayer caused an uproar with controversial, racially charged comments he made in an interview with Playboy magazine. But amid the statements of outrage — and his own apologies — one group is coming to the Grammy-winning singer/songwriter’s defense: the Isaac Foundation, a charity for which Mayer has helped raise money.

“I thought I would take to our blog to write a quick defense of John Mayer, someone that I have grown to respect for the kind, caring, and compassionate person that he truly is,” reads a message from Andrew McFadyen, the founder of the organization dedicated to curing MPS VI, a rare, progressive disease in children caused by an enzyme deficiency. Mayer has reportedly worked with the charity since the summer of 2008 and has kept in touch with Isaac McFadyen (the child who inspired the organization) and his family.

“I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around — ever. But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved,” the message on the site reads. “A few minutes ago, I asked Isaac to tell me three words he would use to describe John, and he responded, ‘Nice, Friendable, and Loveable.’ Print that, bloggers, and give John his fair shake.”

Mayer invited the 5-year-old Isaac and his family to his show in Toronto on Sunday, which followed his tour kickoff in Detroit on Saturday. After visiting with the McFadyens, the singer broke his self-imposed Twitter hiatus to link to the Isaac Foundation site.

“Thank You Toronto,” Mayer tweeted. “Here is my friend Isaac I was telling you about. He made me the Valentine card tonight.”

Mayer can also be seen in a video from Sunday’s show thanking Isaac for the Valentine onstage. “Sometimes you get beautiful things out of little, tiny mistakes,” the singer said.

Over the weekend, Mayer also got support from another camp: porn production company Vivid Entertainment, which offered him a job penning scripts.

“We read about your interest in porn in the current issue of Playboymagazine,” founder/co-chair Steven Hirsch said in a letter posted onTMZ.com. “When we learned that you make up backstories in your mind and that your ‘biggest dream is to write pornography,’ we decided we’d like to talk to you about doing just that and possibly directing as well.”

According to the New York Daily News, Mayer’s publicist said he wouldn’t be accepting the offer.

Do you think John Mayer’s charity work makes up for his big mouth? Should he take Vivid’s offer and quit his day job? Sound off below!

Charity Defends John Mayer as “Kind, Caring”

020310_john_mayer_544_spl132289_004By CATHERINE DONALDSON-EVANS – PEOPLE MAGAZINE

02/15/2010 at 01:15 PM EST

After getting hammered for his Playboy interview,John Mayer has finally found a friend.

The Isaac Foundation, which raises money for children with a rare enzyme deficiency known as MPS VI, says in its blog that the 32-year-old singer is a “kind, caring and compassionate person” they have come to “respect.”

“I don’t care what Playboy magazine writes about the man, and I don’t care what John says to the journalists that write what they do about him,” writes the group’s founder, Andrew McFadyen. “In America, it’s all part of the game.”

Mayer has donated generously to the group and spent time with Isaac, the little boy with MPS VI, and his father McFadyen. Mayer met Isaac when the boy was 4 years old before a concert in Toronto in July of 2008. Mayer blogged that the little boy was “one of the coolest kids I’ve ever met.”

Keep up with John Mayer in the pages of PEOPLE Magazine by subscribing now.

“I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around – ever,” McFadyen writes. “But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved.”

Mayer has given Isaac’s family love and a sense of “hope” that there is a cure for the disease, McFadyen says.

“Write what you want about John, think what you will, but before you hand down your verdict on what kind of person he really is, please consider the good he has done in his life.”

In the fallout since his interview, Mayer had stopped his typically incessant Tweeting – but he recently broke his Twitter silence to link to The Isaac Foundation’s Web site.

See what other readers have to say about this story – or leave a comment of your own

Charity Defends John Mayer as "Kind, Caring"

020310_john_mayer_544_spl132289_004By CATHERINE DONALDSON-EVANS – PEOPLE MAGAZINE

02/15/2010 at 01:15 PM EST

After getting hammered for his Playboy interview,John Mayer has finally found a friend.

The Isaac Foundation, which raises money for children with a rare enzyme deficiency known as MPS VI, says in its blog that the 32-year-old singer is a “kind, caring and compassionate person” they have come to “respect.”

“I don’t care what Playboy magazine writes about the man, and I don’t care what John says to the journalists that write what they do about him,” writes the group’s founder, Andrew McFadyen. “In America, it’s all part of the game.”

Mayer has donated generously to the group and spent time with Isaac, the little boy with MPS VI, and his father McFadyen. Mayer met Isaac when the boy was 4 years old before a concert in Toronto in July of 2008. Mayer blogged that the little boy was “one of the coolest kids I’ve ever met.”

Keep up with John Mayer in the pages of PEOPLE Magazine by subscribing now.

“I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around – ever,” McFadyen writes. “But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved.”

Mayer has given Isaac’s family love and a sense of “hope” that there is a cure for the disease, McFadyen says.

“Write what you want about John, think what you will, but before you hand down your verdict on what kind of person he really is, please consider the good he has done in his life.”

In the fallout since his interview, Mayer had stopped his typically incessant Tweeting – but he recently broke his Twitter silence to link to The Isaac Foundation’s Web site.

See what other readers have to say about this story – or leave a comment of your own

Teenager’s Fight Against Cancer Now Being Waged In Manilla

John Campbell

By John Campbell Community Press

Wooler – Darren Vink’s two-year battle to overcome cancer now lies in the hands of a clinic in the Phillipines where he’s getting injections of a drug not yet approved in Canada.

Vink, 17, began receiving Rexin-G, a form of gene therapy that targets tumours, July 20 and the initial results have been encouraging. Two of the visible tumours, on his ribs and chest, shrank by about 20 per cent within a week of starting treatment, “which is incredible, best news we’ve heard,” said his father, John, last week.

Staff at the clinic are “amazed … (by) the amount of progress that he’s made, he’s surpassed all their other records.”

Those who know Darren aren’t surprised. The teenager, who loves to tinker with farm engines, attend 4-H meetings and go paintballing with friends, has shown remarkable resilience since being diagnosed with osteosarcoma in his right femur in July 2007, He started chemotherapy immediately and had his knee replaced in October. The chemotherapy ended in April 2008 but four months later Darren began complaining of pain in his other knee. Tests confirmed the cancer was back, this time in his spine and lungs as well as his left knee. Since then he’s had two major surgeries on his spine and his other knee replaced.

Radiation and surgeries slowed progression of the disease but by spring of this year the staff medical oncologist at Mount Sinai Hospital in Toronto where Darren was being treated was telling the family, “We’ve given the best drugs we can for chemotherapy. Unfortunately, there’s nothing more we can do,” John said. “They never did say (Darren) has X amount of days to live … We never asked nor did we really want to know.”

And Darren showed no signs he was about to let cancer get the better of him. He continued to live his life much as he had done before, doing the things that boys his age like to do, such as riding on a four-wheeler – but in his case using a long stick to shift gears.

Although is body is frail and the cancer has taken its toll, “Darren is still strong,” his father said. “How can we give up.”

Darren isn’t about to nor are his parents and three siblings, along with friends of the family and members of the community who have shown their support with numerous acts of kindness and donations of money.

It was Darren’s mother, Ilse, who read about Rexin-G on a cancer blog in June and got the ball rolling for her son to begin receiving treatment at the Epieus clinic in Manila. The gene therapy, which targets and destroys cancer cells, is still in clinical trials in the United States but is commercially available in the Phillippines.

“The scientific articles on Rexin-G, sponsored by the manufacturer, claim cessation of disease progression, and improved survival times,” said Dr. Kathy Wilkins, a Campbellford veterinarian and close friend of the family.

The founder of the clinic, Dr. E.M. Gordon, “communicated extensively with the Vinks via e-mail to determine Darren’s eligibility to start Rexin-G,” Wilkins said. She “also put them in touch with the Lazarex Cancer Foundation.” Its mission is “To provide resources for cancer patients who’ve been told they have no other options but who are not yet done with their journey in life and refuse to give up now.”

The foundation “has been instrumental in getting Darren and Ilse to the Philippines,” Wilkins said, covering all their travel, accommodation and treatment costs – $40,000 – for the first month.

Darren, who is being given Rexin-G five times a week, is about to complete his first round of treatment and return home within days. He’ll rest for two weeks before heading back to Manila to begin a second round.

Four to five treatment cycles will be necessary and the surgical removal of the remaining tumour masses, if possible, could follow.

“It’s terrific that he’s seen such good response to the medication but they’re half-way across the world and they want to be home,” Wilkins said.

She is assisting the Vinks in applying to Health Canada’s Special Access Program to have Darren be treated with Rexin-G in Toronto by an oncologist at the Hospital for Sick Kids who’s a member of its New Agents and Innovative Therapies Group.

Wilkins has enlisted the help of Andrew McFadyen, a Trent Hills resident who went through the same process for his son Isaac, who suffers from an extremely rare disease caused by an enzyme deficiency.

His campaign to have the federal government approve use of medication that his son needed made headlines because the annual cost of his son’s medication is huge, in the hundreds of thousands, which the provincial government, as health-care provider, wasn’t prepared to assume initially. It did eventually as a result of intensive lobbying by McFadyen and his supporters.

McFadyen accompanied John Vink to a meeting this week with an oncologist at Sick Kids who “does seem receptive to the idea” of taking Darren on as a patient; it’s a commitment the federal program requires in order to allow use of a medication not yet approved in Canada. It’s also essential that provincial funding be secured to underwrite the cost of treatment.

McFadyen said Monday he has spoken to local MPP Lou Rinaldi to inform him of the family’s situation and to make him aware the Ontario government will be asked to help.

“I’m quite confident Lou, with his experience, will be passionate and work as diligently as he can on the file in order to advance it,” he said.

And he will continue “to advocate on behalf of the family at the federal level if it needs to go there,” added McFadyen.

“I’ll be here as a contact for them and a voice if they need one.”

He said the Vinks “have a whole slew of things going on” – dealing with a sick child, looking after three other children, running a farm that raises beef cattle – so moving the approval process forward as quickly as possible is critical, which he hopes to facilitate by drawing upon his own experience.

“There’s not a day that goes by that I don’t remember exactly where we were and how difficult that was.”

Darren and his mother are to meet with the oncologist next week.

John Vink said he and his family are thankful for the generosity the community has shown them. “I hate to think how things would be otherwise,” he said. The costs involved in making sure Darren is given the best medical care the country provides “would have been too much for us to do on our own,” he said. “Every day there’s somebody else (stepping forward). They’re praying for you or they’re helping out financially.” Or making meals – “the list goes on.”

Even though Canada’s health-care system overall has “been good,” John said,, “unfortunately, (it’s not) been quite good enough.”

Marion Greveling, a 4-H parent and friend of the family, is spearheading fundraising efforts on behalf of Darren. Anyone wishing to make a donation or assist in any way can call her at 613-475-2075.

Teenager's Fight Against Cancer Now Being Waged In Manilla

John Campbell

By John Campbell Community Press

Wooler – Darren Vink’s two-year battle to overcome cancer now lies in the hands of a clinic in the Phillipines where he’s getting injections of a drug not yet approved in Canada.

Vink, 17, began receiving Rexin-G, a form of gene therapy that targets tumours, July 20 and the initial results have been encouraging. Two of the visible tumours, on his ribs and chest, shrank by about 20 per cent within a week of starting treatment, “which is incredible, best news we’ve heard,” said his father, John, last week.

Staff at the clinic are “amazed … (by) the amount of progress that he’s made, he’s surpassed all their other records.”

Those who know Darren aren’t surprised. The teenager, who loves to tinker with farm engines, attend 4-H meetings and go paintballing with friends, has shown remarkable resilience since being diagnosed with osteosarcoma in his right femur in July 2007, He started chemotherapy immediately and had his knee replaced in October. The chemotherapy ended in April 2008 but four months later Darren began complaining of pain in his other knee. Tests confirmed the cancer was back, this time in his spine and lungs as well as his left knee. Since then he’s had two major surgeries on his spine and his other knee replaced.

Radiation and surgeries slowed progression of the disease but by spring of this year the staff medical oncologist at Mount Sinai Hospital in Toronto where Darren was being treated was telling the family, “We’ve given the best drugs we can for chemotherapy. Unfortunately, there’s nothing more we can do,” John said. “They never did say (Darren) has X amount of days to live … We never asked nor did we really want to know.”

And Darren showed no signs he was about to let cancer get the better of him. He continued to live his life much as he had done before, doing the things that boys his age like to do, such as riding on a four-wheeler – but in his case using a long stick to shift gears.

Although is body is frail and the cancer has taken its toll, “Darren is still strong,” his father said. “How can we give up.”

Darren isn’t about to nor are his parents and three siblings, along with friends of the family and members of the community who have shown their support with numerous acts of kindness and donations of money.

It was Darren’s mother, Ilse, who read about Rexin-G on a cancer blog in June and got the ball rolling for her son to begin receiving treatment at the Epieus clinic in Manila. The gene therapy, which targets and destroys cancer cells, is still in clinical trials in the United States but is commercially available in the Phillippines.

“The scientific articles on Rexin-G, sponsored by the manufacturer, claim cessation of disease progression, and improved survival times,” said Dr. Kathy Wilkins, a Campbellford veterinarian and close friend of the family.

The founder of the clinic, Dr. E.M. Gordon, “communicated extensively with the Vinks via e-mail to determine Darren’s eligibility to start Rexin-G,” Wilkins said. She “also put them in touch with the Lazarex Cancer Foundation.” Its mission is “To provide resources for cancer patients who’ve been told they have no other options but who are not yet done with their journey in life and refuse to give up now.”

The foundation “has been instrumental in getting Darren and Ilse to the Philippines,” Wilkins said, covering all their travel, accommodation and treatment costs – $40,000 – for the first month.

Darren, who is being given Rexin-G five times a week, is about to complete his first round of treatment and return home within days. He’ll rest for two weeks before heading back to Manila to begin a second round.

Four to five treatment cycles will be necessary and the surgical removal of the remaining tumour masses, if possible, could follow.

“It’s terrific that he’s seen such good response to the medication but they’re half-way across the world and they want to be home,” Wilkins said.

She is assisting the Vinks in applying to Health Canada’s Special Access Program to have Darren be treated with Rexin-G in Toronto by an oncologist at the Hospital for Sick Kids who’s a member of its New Agents and Innovative Therapies Group.

Wilkins has enlisted the help of Andrew McFadyen, a Trent Hills resident who went through the same process for his son Isaac, who suffers from an extremely rare disease caused by an enzyme deficiency.

His campaign to have the federal government approve use of medication that his son needed made headlines because the annual cost of his son’s medication is huge, in the hundreds of thousands, which the provincial government, as health-care provider, wasn’t prepared to assume initially. It did eventually as a result of intensive lobbying by McFadyen and his supporters.

McFadyen accompanied John Vink to a meeting this week with an oncologist at Sick Kids who “does seem receptive to the idea” of taking Darren on as a patient; it’s a commitment the federal program requires in order to allow use of a medication not yet approved in Canada. It’s also essential that provincial funding be secured to underwrite the cost of treatment.

McFadyen said Monday he has spoken to local MPP Lou Rinaldi to inform him of the family’s situation and to make him aware the Ontario government will be asked to help.

“I’m quite confident Lou, with his experience, will be passionate and work as diligently as he can on the file in order to advance it,” he said.

And he will continue “to advocate on behalf of the family at the federal level if it needs to go there,” added McFadyen.

“I’ll be here as a contact for them and a voice if they need one.”

He said the Vinks “have a whole slew of things going on” – dealing with a sick child, looking after three other children, running a farm that raises beef cattle – so moving the approval process forward as quickly as possible is critical, which he hopes to facilitate by drawing upon his own experience.

“There’s not a day that goes by that I don’t remember exactly where we were and how difficult that was.”

Darren and his mother are to meet with the oncologist next week.

John Vink said he and his family are thankful for the generosity the community has shown them. “I hate to think how things would be otherwise,” he said. The costs involved in making sure Darren is given the best medical care the country provides “would have been too much for us to do on our own,” he said. “Every day there’s somebody else (stepping forward). They’re praying for you or they’re helping out financially.” Or making meals – “the list goes on.”

Even though Canada’s health-care system overall has “been good,” John said,, “unfortunately, (it’s not) been quite good enough.”

Marion Greveling, a 4-H parent and friend of the family, is spearheading fundraising efforts on behalf of Darren. Anyone wishing to make a donation or assist in any way can call her at 613-475-2075.

Kent Students Jump Rope For One Of Their Own

By Mark Hoult, Community Press

Campbellford – Last week the students of Kent Public School handed over a cheque for $4,271 for the Isaac Foundation. The money was raised by students who participated in last month’s Jump Rope Idol contest, an event held each year at the school to promote physical activity and to raise funds for worthy causes.

Last year the event raised money for the Heart and Stroke Foundation. But this time the school decided to help one of their own, Isaac McFadyen and his foundation, said his junior kindergarten teacher Rhonda Rutherford, who organized the Jump Rope Idol, along with teacher Marlene Cole.

Isaac, 5, thanked his fellow students, in presenting the school with a plaque of appreciation, which reads: “With sincere thanks and appreciation, presented to Kent Public School in recognition and support of the Isaac Foundation.”

Rutherford said students responded enthusiastically to the competition and could be seen in the school yard practising their routines in the weeks leading up to the event. And the community responded generously by sponsoring the students, while local businesses donated food certificates, she said.

During his first year at Kent Isaac has become popular with his classmates and has even formed warm relationships with older students, Rutherford said, noting that he also enjoys the company of adults. And in the classroom he’s a joy to teach.

“Isaac is a fabulous student. He always challenges me every day, and comes in first thing in the morning and says, ‘Good morning, Miss Rutherford,’ bright and sunny. And I have to stay one step ahead of him; he’s always got new words for me.”

Five-Year-Old Isaac Making Friends With The Stars

John Campbell

Trent Hills – How many five-year-olds can say they’ve thrown the ceremonial first pitch at a Blue Jay game the night the team’s ace pitcher Roy Halladay is honoured as Sportsperson of the Year, or shared the stage with international pop star John Mayer at a concert in Toronto?

Isaac McFadyen has.

He’s unique in one other respect and that’s how Mayer, Halladay and his wife Brandy came to know him. Isaac is the only one in Ontario with a rare disease known as MPS VI, and is just one of three known cases in Canada. Maroteaux-Lamy Syndrome is caused by an enzyme deficiency that stiffens the joints, stunts growth, damages the heart and hips, and causes clouding of the cornea. It also shortens a person’s lifespan. There is no cure.

It wasn’t long after their son was diagnosed at 18 months of age in October 2005 that Isaac’s parents, Andrew and Ellen, set up The Isaac Foundation to fund treatment and innovative research projects. In three years it’s handed out $180,000 in grants using money raised through the donations of individuals and a host of events, the biggest being a golf tournament it holds annually. The fourth one was held last weekend in Kingston, where Andrew is a Grade 7/8 teacher.

Recently, the foundation committed to a third year of funding for research at Mount Sinai in New York for the development of a therapy to relieve chronic inflammation in the joints of individuals with MPS VI. Another research project the foundation is funding involves “chemical chaperoning” in which a drug administered orally will mimic the effects of the enzyme Isaac lacks.

“It’s probably as close to a cure as we may find over the next 10 years,” Andrew said

Until one is found, Isaac must undergo enzyme replacement therapy once a week at Hospital for Sick Children in Toronto. He’s also had several operations and what would be routine for most children, such as the removal of tonsils, is anything but for Isaac. Any time he is anesthetized “is a major, major issue,” because of his breathing problems, Andrew said.

Last year he underwent surgery for his spinal cord which had become so compressed that “any type of bump or fall could have paralyzed him.”

Isaac, who’s bubbly and outgoing, is a far different boy from what his parents feared he might be at his age when they were told the disease he had. The outlook was not good but dread has given way to hope.

Isaac’s last six months have been his “healthiest,” his parents say.

He runs, climbs, plays games – “doing all the things that other kids do,” Ellen said. “I never thought at the age of five that he’d be doing this well.”

His breathing has improved and he’s sleeping better as a result. He’s also growing, albeit “at a slowed-down rate,” Andrew said.

“In most ways he’s quite normal,” Ellen said, and “fits in really well” with other children at Kent Public School where he attends junior kindergarten.

The couple can thank the Ontario government for Isaac’s doing well. It’s footing the bill for his enzyme replacement – the cost is staggering, running between $300,000 and $1 million a year — but it took the prodding of Opposition health critic Elizabeth Witmer to help make it happen.

The couple lobbied the government for eight months, backed by Witmer, and their cause made the front pages of Toronto newspapers and was covered extensively by television and radio stations.

Their campaign ended when then-health minister George Smitherman announced in July 2006 that the province would pick up the tab for Isaac’s therapy.

Andrew is deeply grateful that Witmer fought on the couple’s behalf and he regularly provides her with reports of “firsts” by Isaac, such as his first soccer game, his first report card.

“I’ll do that for his entire life,” Andrew said. From his graduation from public school to his graduation from high school, he’ll keep her updated. And “when we make an announcement that we found a cure … I want her there.”

Andrew also praises the Liberal government for finally agreeing to cover the costs of Isaac`s therapy. “They saved his life, and it’s not often a government can see those direct results that quickly and that unequivocally,” Andrew said.

The support their fundraising has received from two bona fide stars in sports and entertainment has been immensely helpful.

“Having somebody like Roy Halladay and John Mayer jump onboard is really important to us,” he said.

The night Halladay got his award, he received a $1,000 cheque which he matched and turned over to the foundation. He subsequently donated 16 tickets to his skybox at the Rogers Centre to be auctioned off last weekend, and vowed that he and his wife “were going to be in this for the long haul” in their support of the Isaac Foundation.

And after Mayer, “one of the biggest pop musicians in the world,” wrote about meeting Isaac on his blog, “we had 30,000 hits on our website in a couple of weeks,” Andrew said. Their encounter also made the pages of a celebrity magazine.

He and Ellen pledged from the get-go that the foundation would operate with minimal overhead and move quickly in getting grants out the door.

“We’re so proud of the fact that we can say that 98 to 99 per cent of all money that comes in goes directly back out to research,” Andrew said.

Even though this has been “the healthiest six months” Isaac has enjoyed, the couple remain mindful that things could change at any time.

“It’s always wait and see,” Ellen said. Every day Isaac is able to enjoy life like any other kid his age, “I am able to live in the moment … That’s how I cope,” she said. “I don’t look too far down the road.”

“I look at where we could be still and it’s very difficult,” Andrew admitted. His emotions “bounce back and forth,” and it’s on those hour-long drives to Kingston or while sitting in an empty classroom that he finds himself crying. But as soon as he gets home and sees Isaac and his younger brother Gabriel at play, it lifts his spirits.

“I get regrounded,” he said.

To learn more about the Isaac Foundation, visit www.theisaacfoundation.com.