Matthew’s Story

In the quiet of the night, as most of the world slows down, Matthew’s mind lights up with relentless activity. This uncommon phenomenon has profoundly shaped every aspect of Matthew’s life.

As a baby, Matthew was diagnosed with a severe and rare form of epilepsy known as electrical status epilepticus in sleep. “Everything was fine for the first few months,” Melanie, Matthew’s mother, explains. “But then somewhere between six to seven months it was like a flip switched – everything changed.”

Matthew is now 13 years old and continues to suffer from regular seizures; although, they do not appear in the typical way one might imagine. Matthew’s seizures occur in his brain when he closes his eyes to sleep. “As soon as he falls asleep, he goes into a continuous seizure state,” Melanie shares.

During the night, Matthew may seem to be in a typical slumber, but within his brain, there is constant activity, preventing it from getting the critical rest it needs. The seizures have had a long-term impact on Matthew’s brain, resulting in significant gross and fine motor delays. Matthew is non-verbal and relies on various devices to support his mobility throughout the day. “Matthew can walk very short distances and move around a little bit on his own, but he can’t get very far, and he gets very tired,” Melanie explains.

Matthew uses a wheelchair to enjoy walks outside with his family, which he loves. He also will use a walker to help him navigate indoor spaces more easily. However, the 15-step staircase up to the second floor of Matthew’s home became a significant daily challenge for him and his family.

“If he has a lot of energy earlier in the day, he can kind of crawl up the stairs. But even then, you never know if he is going to get tired midway,” Melanie shares. “And he is getting as big as I am now, so it was just getting really hard.” Thankfully, with the help of Easter Seals donors, Melanie was able to purchase a new stairlift that allows Matthew to transfer safely and comfortably up and down the stairs. “It has been a huge, huge change. We would always have to worry about getting him upstairs by a certain time in case he started to get tired, or he would have to miss out on parts of his daily routine if we couldn’t get him upstairs.”

Matthew loves listening to music and reading books. He enjoys being up and about and around others. Matthew has two sisters, and he just wants to be able to join them in the same activities and daily family routine. “He is delayed, but he likes to have fun,” Melanie shares. “He wants to follow us and move around the house, just like any other little boy.”

The new stairlift has not only allowed Matthew to live with greater safety on a daily basis, but it has helped him to be included in regular family activities. “There was a barrier because he couldn’t move up and down the stairs on his own, and we can’t keep moving him as he is not a baby anymore,” Melanie shares. “So the stairlift has allowed for him to be able to go through his daily routine, same as the two girls. Now when it’s time for bath, and he hops on and we bring him upstairs.”

Without the support received through our Equipment Funding Program, Matthew’s family may have had to move into a home he is unfamiliar with. Because of the generosity of donors like you, Matthew’s family has been able to make his daily life easier, safer, and more comfortable in the home he has grown up in.

As we share this heartfelt story of Matthew and his family, we invite you to join us in making a difference. Your support can help more children with physical disabilities access the equipment and resources they need to thrive. Together, we can continue to make stories like Matthew’s possible. Thank you for your generosity.