Burhanuddin’s Story

Burhanuddin is a sweet, 4-year-old boy who enjoys Daniel Tiger, Miss Rachel, and spending time with his mom, Maria. He just started school this year, and it’s his first time spending much time away from Maria.

 Burhanuddin was born with a very rare condition called Canavan disease. It is a genetic disorder that causes a degeneration of brain matter, which interferes with signals from his brain being sent to the rest of his body. “He is our first and only child,” shares Maria. “He was diagnosed at 5 months old, and we were very surprised as no one in either of our families has the disease… it severely affects his motor functions.”

Burhanuddin is not able to stand up on his own. However, through the support of Easter Seals Ontario’s Equipment Funding Program, Maria was able to get him his first pair of Ankle-Foot Orthotics (AFOs), which typically cost between $1,500-4,000. AFOs are supportive devices that help to stabilize Burhanuddin’s joints so he can stand and bear weight on his lower limbs. He wears them throughout the day to maintain the range in his feet and encourage healthier development.

His AFOs are just one piece of many mobility and accessibility equipment items Burhanuddin relies on each day.  Easter Seals has also provided funding toward his pediatric stander, which allows him to stand in an upright position. “He is often lying down or sitting, so he is just happier when he is standing and it gives him an opportunity to view the world in a different light,” Maria explains. “The stander helps with weight bearing as well and it is also very important for his hips and helps reduce dislocation, which he struggles with.” Standers can cost between $2,500 – $8,000.

“Before becoming a parent of a child with a disability, I had no idea how expensive these items could be,” Maria shares. “Even with partial funding from the government’s Assistive Devices Program (ADP), the remaining cost can be a big amount and sometimes we haven’t been able to afford it. My son needs equipment, and he needs it for his everyday life… so I am just really grateful to Easter Seals for providing funding so he can have all of the things he really needs.”

As Burhanuddin begins to venture out of his house and attend school, another piece of equipment has become critical for him – his stroller wheelchair. Although Burhanuddin is only 4 years old, he is very tall – nearly three and a half feet – so commercial strollers are no longer big enough to support him. The cushion seat that came with his stroller wheelchair was also too small for his frame, but Maria was able to apply for funding from Easter Seals to help purchase a custom cushion seat that would offer the support Burhanuddin requires. “Without that seat, the wheelchair is useless because he would have nowhere to sit. The new cushion seat is moulded so that it fits him properly, so his legs and his trunk are supported. This is very important because he has no trunk control either… So now we’re using the wheelchair every day, at home and at school… it is his main mode of transportation.”

 While every parent wants to provide their child with the tools they need to thrive, the high cost of mobility and accessibility equipment can be overwhelming for many families. “I cannot tell you how terrible it feels as a parent to have to wait for your child to get the healthcare or the necessary items they need,” Maria shares. “I’m really grateful for Easter Seals, that we can access this program and it can cover the gaps that we have in funding, which are huge. Especially when he is growing so quickly and the equipment gets outgrown and needs to be replaced.”

Thanks to generous donors like you, Easter Seals Ontario can continue supporting children like Burhanuddin, helping them access the essential equipment they need to thrive. Your ongoing support empowers us to provide critical assistance for many more children and families facing similar challenges. Together, we’re making a real difference—thank you for standing with us.