treatment

06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Radio, Saskatoon Siblings Permalink

Health Ministry denies funding for Sask. siblings with rare genetic disease

Sticky Post By On 6 October, 2015

Lasia Kretzel

 October 5, 2015 – 5:20pm

Muhammad Akhter spent 12 hours trying to figure out how to tell his wife some terrible news.

The couple’s three children have been denied treatment coverage from the province for their rare genetic disease, but Health Minister Dustin Duncan said he will seek a second opinion.

Muhammad Abdullah, 12, Khadija Amir, 10 and Sara Amir, 8 have an enzyme-related disease called Morquio A Syndrome (also called MPS IV type A). Their bodies lack an enzyme in their blood that breaks down cellular waste in the body. Without treatment it can lead to multiple diseases and premature death. The children have already experienced growth problems and stiff joints. Two of the them already use wheelchairs.

There is no cure, but treatment with a synthetic enzyme called Vimizim could slow down the disease and potentially extend the life of the children. The treatment would cost hundreds of thousands of dollars a year for each child.

“I was not expecting to be denied from the (common drug review’s) side because this is the last resort. This is the last hope,” Akhter said. “It’s a feeling, it’s a pain from the inside. It’s pretty hard.”

The Ministry of Health sought consultation from experts outside the province and provided information from the family and their physicians. Health Minister Dustin Duncan said they were told the drug wouldn’t be as effective on the children because they were older than five years.

“The longer it takes for this drug to be administered, the disease progresses to a point where it just becomes a question of whether or not there is efficacy to administering this drug,” Duncan said. “You would like to be able to say yes to everybody, but you want to ensure that for the sustainability of the system that you’re using the health care dollars as wisely as possible.”

Morquio A Syndrome only affects an estimated 100 people in Canada right now, according to the group Morquio in Canada.

IS IS THE LAST HOPE.

The Isaac Foundation said another Saskatchewan child has already received funding for the treatment, and Duncan said he only knew of one child being approved for therapy in recent memory.

The family, with the support of the foundation, met with the minister Monday to plead him to reconsider.

Duncan said because another child was approved for the drug before and because he feels there is debate in the medical community about the effectiveness of the drug at certain ages, he would like to review the siblings’ case.

“I’m going to ask the ministry to consult further with some other out-of-province experts to give me a second opinion on this,” Duncan said. “There’s not a lot of options for these patients so we want to make sure we give a full look before we close the door.”

Akhter said the family is now waiting anxiously, adding they aren’t sure what they will do if the second answer is still no.

“It’s like night and night; no shining,” he said.

  Email  lkretzel@ckom.com
  Twitter  @lkretzel
06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Newspaper, Saskatoon Siblings Permalink

SASKATOON FAMILY DENIED FUNDING FOR TREATMENT

Sticky Post By On 6 October, 2015

It’s a parent’s worst nightmare; watching your child lose a battle to a devastating disease. Now imagine having to suffer through it multiple times.Muhammad, Sara and Kadija Akhter suffer from a rare but crippling genetic disease called Morquio Syndrome that’s changed their childhood.“This syndrome is progressive. So every day they are losing something … they’re losing more and more. So it’s getting tougher for the family as well as the kids,” said father Amir Akhter. Story continues below

Rare genetic disease diagnosed in 3 kids from same Saskatoon family

The siblings all have the disease which occurs when people are missing a genetic enzyme. It’s twisting their joints, seriously impacting their vision and hearing and they can hardly walk or run.

 There is no cure, but until recently, there was still hope. The family was anxiously hoping the province could pay for a treatment called Vimizim. The therapy could help them live longer and could even halt the progression of their disease.The therapy costs hundreds of thousands of dollars.On Monday, there was more heartbreak. The family was denied funding for the treatment.“I should say that we are although walking and eating…we sometimes feel that we are not alive. And we have many challenges. And there is no hope from any end,” said Amir Akhter.

It’s something Amir Akhter would never say in front of them but without therapy, Muhammad, Sara and Kadija could die. Still, they’re hopeful.

They spent Monday in Regina, urging the Saskatchewan Ministry of Health and the premier to reverse the province’s decision.“Hopefully if we get that treatment … there is a new life, new whole life, new world, everything for us, for our family,” said Amir Akhter.

But Saskatchewan Health Minister Dustin Duncan argues that because the kids are past the age of five, this particular treatment may not even be effective.  “The health world is so complex and there are so many diseases and so many drugs. You want to be able to say yes to everyone but … healthcare dollars as wisely as possible,” Duncan said.

Still, the minister says he will have a second look.  On the other hand, others argue that there’s no time for that and that this therapy is their last shot at survival.  “They deserve a lifeline. They deserve some hope. And the potential of halting this disease is so critically important to this eight-year-old, this 10-year-old this 13-year-old and of course, this family,” said Saskatchewan NDP deputy leader Trent Wotherspoon.  Although a decision has already been made, they are expected to hear back about a reversal in the next 10 days.  Until then, the family will hold on to all they have, their children and hope.

© Shaw Media, 2015

SOURCE:  http://or-politics.com/canadahealth/saskatoon-family-denied-funding-for-treatment/102383/

06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Newspaper, Radio, Saskatoon Siblings Permalink

Funding For Rare Disease Treatment Denied, But Health Ministry Will Reconsider

Sticky Post By On 6 October, 2015
Written by Carol Thomson
Category: Local News

The executive director of an advocacy group for rare diseases like Morquio Syndrome is puzzled as to why access for treatment has been denied for 3 Saskatoon siblings.

Andrew McFadyen, from the Isaac Foundation, along with the children and their father Amir Akhter spoke with Saskatchewan’s Health Minister this morning (Mon) in hopes of changing his mind.

McFadyen says the file on this case was sent to Ontario for review by only one person with no opportunity for different points of view, so today, he took the opportunity to speak to Dustin Duncan about why he should reverse the decision.

He adds that the Akhter family first requested access to provincial funding in March of 2014 and although the treatment wouldn’t cure the children, it could dramatically halt progression of the disease.

Dustin Duncan has said he will have another look at the case, but no date has been set for a decision.

The treatment is expensive at approximately $300,000 per year per child, but McFadyen says you could also argue that the cost of dealing with the effects of the disease when not treated could be similar when considering hip surgeries, corneal replacements, medical appointments, and other costs.

Duncan says the treatment costs $500,000 per patient.

There is a 2 year old in the province that has funding for treatment, which Duncan says is because the belief is that it’s more effective for children under 5.

McFadyen disputes that saying there is no data that actually proves that to be true.

SOURCE: http://www.saskatoonhomepage.ca/index.php?option=com_content&view=article&id=69454:funding-for-rare-disease-treatment-denied-but-health-ministry-will-reconsider&catid=61&Itemid=179

06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Radio, Saskatoon Siblings Permalink

Sask Health Minister wants second opinion on treatment for three Saskatoon children

Sticky Post By On 6 October, 2015

Saskatchewan Health Minister Dustin Duncan is asking for a second opinion on an unproven drug to treat three young Saskatoon children.

Initially coverage for the drug was denied last week.

The drug is been used to treat a very rare and fatal blood disease called Morquio Syndrome.

Health Minister Duncan says he wants to make sure they do their due diligence.

There is one child in the province who is on the drug to treat the same disease. However studies seem to show it’s effective for those under the age of five.

But in this case the three children are eight or older.

The drug costs five hundred thousand dollars a year per patient.

SOURCE: http://www.620ckrm.com/ckrm-on-air/ckrm-local-news/12882-sask-health-minister-wants-second-opinion-on-treatment-for-three-saskatoon-children

06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Radio, Saskatoon Siblings Permalink

Saskatchewan health minister to seek second opinion for family denied drugs

Sticky Post By On 6 October, 2015
at 18:36 on October 05, 2015, EDT.

The Canadian Press

REGINA – Saskatchewan’s health minister says he will ask for a second opinion on an unproven drug for three Saskatoon children with a rare and often fatal blood disease.

The Akhter family has met with Dustin Duncan to ask that the government cover the expensive treatment for Morquio syndrome.

It would cost $500,000 a year per child and the family’s funding request was turned down by ministry officials last week.

The drug is not a cure, although studies indicate it is effective in slowing down the disease in children under five.

In this case, the three children are eight, 10 and 12.

Duncan says he wants to make sure the department does its due diligence.

“It’s a very difficult situation, so I’m going to ask the ministry to consult further with some other out-of-province experts to give me a second opinion on this,” Duncan said Monday.

“While the answer last week was no, it doesn’t mean it’s no forever.”

There is one child in the province who is on the drug.

Duncan said it’s important to get as much information as possible through the drug review process and from the manufacturers.

NDP Opposition critic Trent Wotherspoon said he feels the family should get coverage on compassionate grounds, even if the drug is not 100 per cent proven.

“They deserve a lifeline. They deserve some hope,” Wotherspoon said. “The potential of halting this degenerative disease and the progression of that disease is so critically important (to these children).”

Morquio syndrome is a hereditary disease in which the blood lacks a certain enzyme. The syndrome is characterized by skeletal defects such as stunted growth, deformity of the spine and chest, short neck and loose and enlarged joints. It can also lead to thin tooth enamel and corneal clouding.

The Isaac Foundation, an organization that funds research projects aimed at finding a cure for Morquio syndrome, is advocating for the Akhters.

Executive director Andrew McFadyen said the decision to deny funding was made on scant evidence.

“This was only looked at by one reviewer in Ontario, who clearly disregraded the international treatment guidelines, who clearly ignored the Canadian expert opinion on treating this disease,” McFadyen said.

The ministry has suggested the family take a long-term palliative approach to care for the children.

McFadyen suggested that may prove even more costly to the health-care system.

“When we look at the total cost of that drug, it’s often noted that the cost to not treat these children may be the same … when you look at interventions, medical appointments, hip replacements, corneal transplants, etc.”

(CKRM, CJWW, The Canadian Press)

Content Provided By Canadian Press.

Source:  http://www.cfra.com/HealthCP/Article.aspx?id=481958
06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Newspaper, Saskatoon Siblings, Television Permalink

Treatment funding denied for 3 children with rare genetic disease

Sticky Post By On 6 October, 2015

SASKATOON – It’s a parent’s worst nightmare; watching your child lose a battle to a devastating disease. Now imagine having to suffer through it multiple times.

Muhammad, Sara and Kadija Akhter suffer from a rare but crippling genetic disease called Morquio Syndrome that’s changed their childhood.

Video – http://globalnews.ca/video/2260432/treatment-funding-denied-for-3-children-with-rare-genetic-disease

“This syndrome is progressive. So every day they are losing something … they’re losing more and more. So it’s getting tougher for the family as well as the kids,” said their father, Amir Akhter.

There is no cure, but until recently, there was still hope. The family was anxiously hoping the province could pay for a treatment called Vimizim. The therapy could help them live longer and could even halt the progression of their disease.

The therapy costs hundreds of thousands of dollars.

On Monday, there was more heartbreak. The family was denied funding for the treatment.

“I should say that we are although walking and eating…we sometimes feel that we are not alive. And we have many challenges. And there is no hope from any end,” said Akhter.

It’s something Amir Akhter would never say in front of them but without therapy, Muhammad, Sara and Kadija could die. Still, they’re hopeful.

They spent Monday in Regina, urging the Saskatchewan Ministry of Health and the premier to reverse the province’s decision.

“Hopefully if we get that treatment … there is a new life, new whole life, new world, everything for us, for our family,” said Akhter.

READ MORE: Rare genetic disease diagnosed in 3 kids from same Saskatoon family

But Saskatchewan Health Minister Dustin Duncan argues that because the kids are past the age of five, this particular treatment may not even be effective.

“The health world is so complex and there are so many diseases and so many drugs. You want to be able to say yes to everyone but … healthcare dollars as wisely as possible,” Duncan said. Still, the minister says he will have a second look.

On the other hand, others argue that there’s no time for that and that this therapy is their last shot at survival.

“They deserve a lifeline. They deserve some hope. And the potential of halting this disease is so critically important to this eight-year-old, this 10-year-old this 13-year-old and of course, this family,” said Saskatchewan NDP deputy leader Trent Wotherspoon.

Although a decision has already been made, they are expected to hear back about a reversal in the next 10 days.

Until then, the family will hold on to all they have, their children and hope.

© Shaw Media, 2015

Source: http://globalnews.ca/news/2260420/saskatoon-family-denied-funding-for-treatment/

06 Oct 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Newspaper, Saskatoon Siblings Permalink

Province says no to medicine for three children, but will review decision

Sticky Post By On 6 October, 2015

Children suffering from crippling genetic disease
CBC News Posted: Oct 05, 2015 6:43 PM CT Last Updated: Oct 05, 2015 7:00 PM CT
The province’s health ministry says it won’t pay for a costly drug that may help three children with a crippling genetic disease, but Health Minister Dustin Duncan said he will ask for a second opinion.

Muhammad Abdullah, 12, Khadija Amir, 10 and Sara Amir, 8 all have a rare enzyme deficiency called Morquio A Syndrome (also called MPS IV type A).

Without the missing enzyme, cellular waste builds up in the bones, tissues, organs and muscles.

The condition is stunting the children’s growth, twisting their joints, affecting their eyesight and hearing, and making it tough for them to breathe. Two of them use wheelchairs at school.

Muhammad Amir Akhter is the children’s father. He said the disease can be life-threatening.

“Enzyme replacement therapy like Vimizim is the last resort,” Akhter said.

He said despite the current decision, he is staying positive. “It’s pretty hard for us, because this is the last hope here.”

Health minister will get a second opinion

Health Minister Dustin Duncan explained the decision to reject the drug coverage.

“These are very, very complex cases,” said Duncan.

He said in this case there is not enough evidence to prove that the drug will be effective for people over the age of five.

“There’s a lot of opinions on this. And so while we do rely and have relied on a previous case, on an out-of-province expert I’m asking the ministry to consult with others that may have some information on this particular case.”

Duncan said the ministry will review some of the medical debate about the efficacy of the drug, and will invite the Akhter family to submit any further evidence they find.

“While the answer last week was no, it doesn’t mean it’s no forever.”

The Opposition NDP said the children should get the drug since it is their only hope. It added that effectiveness can be monitored while they take it.

15 Sep 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Newspaper, Saskatoon Siblings Permalink

Saskatoon family awaits answer on treatment for crippling disease

Sticky Post By On 15 September, 2015

Three children all suffer from genetic enzyme deficiency that could lead to early death
CBC News Posted: Sep 15, 2015 5:30 AM CT Last Updated: Sep 15, 2015 6:43 AM CT

A family in Saskatoon is waiting and hoping for the solution to a triple heartbreak. Three of the five children suffer from a crippling genetic disease that could kill them.

Muhammad Abdullah, 12, Khadija Amir, 10 and Sara Amir, 8 all have a rare enzyme deficiency called Morquio A Syndrome (also called MPS IV type A).

“Until the age of three to four nobody can judge that there’s anything wrong with them actually,” their father, Muhammad Amir Akhter said. “After that the symptoms appear, and almost every part of the body is affected.”

Without the missing enzyme, cellular waste builds up in the bones, tissues, organs and muscles.

The condition is stunting the children’s growth, twisting their joints, affecting their eyesight and hearing, and making it tough for them to breathe. Two of them use wheelchairs at school.

It’s so rare, it only appears in an estimated one out of every 200,000 to 300,000 children.

Hope placed in costly synthetic enzyme

There is no cure. But a synthetic enzyme called Vimizim could slow or even halt the progression of their disease, and help them live longer.

An advocacy group called the Isaac Foundation said Health Canada approved Vimizim more than a year ago.

Now Akhter and his wife Shazia Amir are waiting to find out if the province will pay the cost, which could be in the hundreds of thousands of dollars each year.

“It’s really hard to wait for the decision,” Akhter said. “You know we are anxiously looking forward to see every day morning, we are looking for any positive response from the government side to get that too, to get started that replacement therapy.”

Health ministry considering compassionate coverage

He said they applied seven months ago. However, Saskatchewan’s Ministry of Health said it only got complete information from the children’s doctor late last month.

It also said the national Common Drug Review made a “Do Not List” recommendation for Vimizim for clinical reasons.

However, the ministry is considering compassionate coverage on a case-by-case basis.

In the case of Akhter’s children, the ministry has sent their requests to an out-of-province specialist for review and advice.

If they are turned down, Akhter said he will consider moving the family to another province that is willing to pay for their treatment. The Isaac Foundation said Ontario and Quebec have reimbursed patients for Vimizim.

14 Sep 2015
Sticky Post By Posted in Advocacy, Blog Postings, Media, Morquio, MPS IVA, Saskatoon Siblings Permalink

For Immediate Release – Saskatoon Siblings Await Funding For Life-Saving Treatment

Sticky Post By On 14 September, 2015

FOR IMMEDIATE RELEASE

SASKATCHEWAN SIBLINGS AWAIT FUNDING FOR LIFE-SAVING TREATMENT

Children Diagnosed With Ultra-Rare Condition; Treatment Already Being Funded In Ontario and Quebec

(Sept. 14, 2015) The Saskatchewan Ministry of Health is currently considering an application for exceptional funding of a life-sustaining treatment required by three siblings from Saskatoon. 8 year-old Sara Amir, along with her siblings Khadija, 10 and Muhammad, 12 have been diagnosed with Morquio Syndrome, and all three require the life-sustaining treatment immediately in order to halt further progression of this devastating disease. The Saskatchewan Ministry of Health received their application to begin treatment with Vimizim, an enzyme replacement therapy approved by Health Canada in July 2014, seven months ago. A review of the application has just been initiated and a decision is expected in the coming weeks.

The children suffer from a rare enzyme deficiency called MPS IVA (also known as Morquio A Syndrome). Sufferers of Morquio Syndrome lack an enzyme in their blood that breaks down cellular waste in the body called glycosaminoglycan (GAG). These GAGs build up in the bones, tissues, organs, and muscles of affected individuals and lead to many devastating symptoms including heart and airway disease, corneal clouding, impaired mobility, shortened stature, and premature death.

While there is no known cure for Morquio Syndrome, a treatment does exist. Vimizim is an Enzyme-Replacement Therapy (ERT) designed to provide patients with a synthetic version of the enzyme they are lacking by infusing small doses into the patient’s bloodstream on a weekly basis. The treatment slows down or halts the progression of the disease in patients, improves endurance, walking distance, breathing problems, and provides other benefits to sufferers that dramatically improve their quality and length of life. International experts and a Canadian Panel of Genetics Specialists have all recommended Vimizim as the front-line treatment for Morquio Syndrome. It was approved by Health Canada in July 2014, and has been reimbursed for use by patients in Ontario and Quebec. Recently, the National Institute for Health and Care Excellence (NICE) recommended reimbursement for all patients suffering from Morquio Syndrome throughout the UK.

Andrew McFadyen, Executive Director of The Isaac Foundation, an advocacy, research, and family support organization that specializes in MPS related diseases, is urging Health Minister Dustin Duncan and Premier Brad Wall to expedite their decision so the children can get the immediate help they need. Since the application was submitted in March, McFadyen has met with Minister Duncan twice to present all of the expert opinion and Canadian and International data that exists regarding the treatment. “Minister Duncan has been privy to all opinions and guidance from the best medical minds across the globe. All of them have recommended this treatment for these kids and I’m confident that a positive decision will be returned in a speedy fashion.”

Though hopeful of a positive outcome for the family, McFadyen can’t help but feel frustrated by the length of time it’s taken to render a decision. “The Minister has had this file for over 7 months, and the initial request for therapy was submitted 19 months ago. Saskatchewan already pays for every other available treatment for MPS Diseases – MPS I, MPS II, MPS VI. This treatment does the exact same thing – saves lives. With the UK and the US already ensuring access to this treatment, there is ample evidence available to help them with their decision. We’ve given them everything they need – it’s time to take action and save these kids.”

Jamie Myrah, Executive Director of the Canadian MPS Society, a national patient association that serves those affected by MPS and related lysosomal diseases, couldn’t agree more. “The Canadian Expert Panel and the International Guidelines for treating Morquio A Syndrome both call for treatment to begin as soon as possible to stave off the devastating effects of this disease. With every day that passes, the chance that irreversible symptoms will appear increases. I am hopeful that the Saskatchewan government won’t allow bureaucracy to have a negative impact of the lives of these children and am therefore confident that a positive decision will be returned soon.”

Myrah and McFadyen both note how impactful the treatment has been for patients already receiving therapy in Canada and in most other developed countries throughout the world. Myrah states, “We are seeing kids improve dramatically because of this treatment – kids’ internal organs reducing back down to a normal size, rates of growth increasing, heart function improved, walking distance increased and the use of mobility aids reduced. Until recently, only supportive care that treats the symptoms of the disease was available to patients, including medication, multiple surgeries, and ongoing occupational and physical therapy. By delaying access to the first and only pharmaceutical treatment option available, governments are leaving patients dependent on supportive therapies that do not address the underlying cause of this severely debilitating disorder. We know this works and we know it changes lives.”

McFadyen adds “We have a video of a 17 year old girl prior to starting treatment and she can’t walk more than 10 steps without having to stop. She’s in agony and it’s heartbreaking to see. After 12 weeks on therapy, she’s happy and walking long distances normally. I’m hopeful we can ensure the same opportunity is given to the Akhter children. It’s the role of government to protect and ensure fair and equitable access to Health Care for all Canadians –regardless of whether they are suffering from a rare disease or not – and we’re calling on this government to take action and save the lives of these children now. They can’t afford to wait.”

 # # #

For more information about this topic, or to schedule an interview to discuss, please call Andrew at 613-328-9136 or email Andrew at mcfadyena@me.com.

 

05 May 2015
Sticky Post By Posted in Advocacy, Fight For Aleena Permalink

Godspeed, Heather. You Will Be Missed!

Sticky Post By On 5 May, 2015

As the Alberta Election race enters the final hours, so too does the official time in office for one of the most honourable and compassionate souls I have ever met. Once the results are announced tonight, the retirement of Heather Forsyth officially begins, bringing an end to a highly successful political career.

I met Heather a few years ago when I was struggling to find help for a little girl, Aleena Sadownyk, who needed immediate access to life-saving treatment.  Because this treatment is expensive (the fourth most expensive drug in the world), we were getting nowhere with the PC government, at that time led by Premier Alison Redford.  Desperate for help, I contacted Heather to see if there was anything she could do in her capacity as the Official Opposition Health Critic.

The moment I spoke with Heather, I knew I had connected with someone that would do everything in her power to help this little girl.  She listened to everything I had to tell her, keyed in on the most important facts of our case, and sprang to action immediately after our initial phone call was over.  I was impressed, and had Hope again for helping little Aleena.

Now, a quick aside.  Over the years, I’ve had the pleasure (sometimes) of working with many politicians throughout the country.  Oftentimes, these politicians offer their help during advocacy cases to further their own stature within political circles – helping with these advocacy cases usually translates into scoring political gain against the government of the day, and members of the Official Opposition jump at the chance to score such points.  I’m not naive in the slightest – I understand that many politicians get involved in my advocacy pushes because of the prospect to score those sought after blows against the government.  And I’ve never minded that fact – I’ll do anything to help our kids suffering from rare diseases, and if a politician wants to help out – for whatever reason – who am I to turn down the help offered, especially when we are talking life and death situations for our kids?

4d5f8030f60e11e2ad2b22000ae80c6b_7While I was impressed with the speed that Heather and her team sprang to action to save Aleena, I was more impressed that I felt she was doing it out of a love for helping people, and a passion for doing what’s right.  Moreover, I truly felt she was working as hard as she did because of the heartache and heartbreak she felt for what Aleena and her family were dealing with.  However, my close friends were skeptical – they have heard me speak often about the help I’ve received in the past and they were sure Heather took this case on for those same reasons.  They were sure she was doing this for political gain and for personal ambitions within that political world.  I vehemently disagreed – I consider myself a good judge of character, and I was sure that Heather was one of those rare people in the world of politics who were helping because they could, and because she felt that it was incumbent on her to make a difference in the life of this little girl if she were able.

And you know what?  My first impression was right.

Shortly after Aleena had her treatment approved – solely due to the hard work of Heather and her team led by Matt Solberg – Heather shared with me that she would not be seeking re-election the next time the Province when to the polls.  Win or lose, Heather didn’t have a political future she needed to worry about.  Political gain didn’t play into the situation at all, though I felt that was the case all along.Aleena is doing incredibly well today – she had her life saved by one of the most caring and compassionate people I’ve ever met – ever – in the world of politics.  When she looks back on a career filled with a long list of accomplishments – from serving in Cabinet to being the Leader of the Official Opposition – I know that Heather will be able to remember Aleena and the impact she had on her life as being one of the most satisfying and rewarding moments.

I’m sad to see Heather leave the world of politics.  She’s one of a kind – one of the few that go into the office everyday to try and make the world a better place for those around them.  She’s always been honest, truthful, kind, caring, and compassionate.  And she saved the life of a little girl.

0b6291d2079211e3943422000a9f1416_7The Alberta Legislature is better for having Heather serve amongst its storied halls, and the people of Alberta are better for having her represent them for so very long.  Personally, I’m a better person for knowing her, and I’m proud to call her Friend.

Godspeed, Heather Forsyth.  Enjoy your retirement, it’s well deserved.  Thank you for your service and your love for our kids battling rare diseases.  We will be sure to send you updates on Aleena as she makes her way through school, as she gets her first job, as she walks down the aisle on her wedding day.  Thank you for your kindness, for your love.  We will forever be indebted to you for that, and more.