A Fort McMurray couple is raising funds for their young son who deals with a rare debilitating genetic disorder.

In January of 2019, Madden Stacey was living a happy normal life until he suffered his first grand mal seizure.

What followed in the coming months was several specialist appointments, an epilepsy diagnosis and many overnight stays at the Northern Lights Regional Health Centre.

After months of hospital visits, Madden’s parents Aaron and Heather grew frustrated with understanding exactly what was wrong with their son.

“We were told it was probably side effects of the medication he was taking because he was taking anti-seizure medications,” Heather said. “Then it was oh, his body is just adjusting to epilepsy. Anyway, we knew all along that something was not right, and it took us a while to get the answers we needed.”

In November, Madden was taken to the emergency room in Fort McMurray and following consultation with doctors in Edmonton – he was airlifted to the Stollery Children’s Hospital – where he spent eight days undergoing procedures.

The Stacey family. Photo courtesy: Aaron and Heather Stacey

On December 12, the 4-year old was diagnosed with Neuronal Ceroid Lipofuscinosis (NCL), a group of disorders commonly referred to as ‘Batten Disease’.

Batten Disease primarily affects the nervous system and is characterized by seizures and a progressive loss in motor, language, visual and cognitive skills.

There are 14 different forms of the disease and in Madden’s case, he was diagnosed with type CLN2 – making him one of less than 500 cases worldwide.

“It’s the one ray of hope that we have in all this,” Aaron said. “There are a lot of families in the world who deal with a type that has no treatment, just management of symptoms and we consider ourselves very lucky and very grateful.”

No Cure But Still Treatable

While the disease has no cure, there is an enzyme replacement therapy that has shown promising results in trials.

Children with CLN2 disease typically begin to show symptoms around ages 4-5; while most see a significant rapid decline after onset of seizure activity and die between 6-12 years.

Brineura is an enzyme replacement therapy that is critical to slowing the rapid deterioration until a cure can be found.

Aaron says as far as he knows, there are only five or six families who are undergoing this treatment.

“There are no cases in Alberta but there are children in Canada who are receiving this very treatment, so, we just need to meet the criteria and jump through the rest of the hoops here to make sure Madden gets the treatment he needs.”

As for Madden, Heather says he’s still a little too young to fully comprehend the gravity of the situation.

However, she says he’s stayed positive through the whole ordeal.

“He can’t get up and walk on his own anymore. He needs assistance so, he does get a little frustrated. And he’s very affectionate like he loves to cuddle and be held but at the same time, he likes to be independent and right now, he’s having a tough time with that.”

Aaron notes that those who know Madden, know him for his infectious laughter and for always having a smile on his face.

Madden with his sister Jayda. Photo courtesy: Aaron and Heather Stacey

His biggest supporter though has been his 11-year old sister Jayda.

“She has been nothing but supportive of her brother and her parents. She’s Madden’s best friend, she cares for him, helps him eat, walk, get dressed, whatever the case may be. She’s playing the role of big sister really good.”

A GoFundMe page has been started by Aaron’s brother from Nova Scotia, which has already generated nearly $30,000 as of Tuesday.

Aaron notes he’s been blown away by the support their family has received.

“Still have a bunch of messages that I haven’t had a chance to get to yet, but I can guarantee that I will be getting to them and thanking everybody I can. Because in a bad situation, it means so much to have the support that we’ve been shown in such a short period of time.”

Aaron and Heather are also encouraging people to share the hashtag #MaddenFights on social media platforms.

You can donate by clicking this link.