Learning his young son has a non-curable disease was “a nightmare come true” for Carbonear native Aaron Stacey.
“I can’t really think of anything worse than having to watch your child go through something like this. Basically, it’s a steady decline or deterioration of daily life skills. To watch that deterioration to the end, I can’t really picture anything worse than that,” Aaron said during a phone interview from his home in Fort McMurray, AB.
Madden, who is now four, was thriving and developing normally until his first grand mal seizure in January 2019.Aaron and his wife Heather are both from Carbonear but have been living in Fort Mac for the past 14 years.
After almost a year of follow-up and specialists appointments, he was diagnosed with Neuronal Ceroid Lipofuscinosis (NCL), type CLN2. NCL refers to a group of disorders, often collectively known as Batten disease.
Information on the family’s Go Fund Me page notes the disease primarily affects the nervous system. It is characterized by seizures and a progressive loss in motor, language, visual, and cognitive skills.
The Staceys explain children with CLN2 disease may have late-infantile onset or later-onset of the disease. In late-infantile onset, children typically begin to show symptoms around age four to five; most see significant decline very rapidly after onset of seizure activity and die between six to 12 years.
While there is currently no cure for Batten disease, Aaron said there is treatment for CLN2.
“Brineura is an enzyme replacement therapy that is critical to slowing the rapid deterioration until we find a cure,” he explained on the fundraising page.
The family’s message is one of hope.
“We will do whatever it takes to ensure Madden gets the treatment he needs to preserve his condition and his quality of life.”
Aaron is off work caring for his son. His brother, Matt Stacey, set up the Go Fund Me initiative in late December. By Jan. 8 donations had reached almost $45,000.
He said "outstanding" support helps his family get through each day.
“Whether it be financial or support in the community ... people calling and texting, support from the Government of Alberta, support from other families in Canada and the United States with Batten disease ... it’s all been absolutely amazing,” Aaron said.
People in the Carbonear area have also been “nothing but supportive,” he said.
“People who I haven’t talked to in years have been reaching out.”
Like her husband, Heather also tries to focus on the positives.
Madden has been a trooper through all the blood work and other challenges he faces, she said. His sister Jayda, 11, has also been amazing through it all.
“She cuddles him, she helps him eat, she just loves him so much,” Heather said.
Madden is starting to show some of the effects of his disease such as loss of motor skills, impaired speech and seizure activity. He needs help walking and eating is becoming difficult.
“Madden is very sick but, at the same time, he’s still a very happy boy,” Aaron said.
Donations to help the family can be made by visiting www.gofundme.com and searching Support Madden’s Fight Against Rare CLN2 Disease.
Financial contributions can also be sent via e-mail to firstname.lastname@example.org.