Insurance companies refuse to help toddler dealing with rare seizure disorder!

Insurance companies keep telling 3-year-old Matthew Sloan Walker no.

It’s tough for a toddler to understand that word sometimes, but it is even more difficult for his family to hear in this case.

Matthew is one of about 35 boys in the world born with subcortical band heterotopia — a brain disorder that causes cognitive and physical impairment. Because his condition is so rare, his family said insurance companies won’t cover most of his treatments or equipment that helps him get around.

Matthew is the son of Cynthia Hadzick-Walker and Jonathan Walker, of Heathron, Fla., and is the grandson of Alexandra and Michael Hadzick Sr., of Freeland.

His mother, a Freeland native, lived in Florida with his father for about seven years.

The condition

Matthew’s muscles don’t move.

He has feeling but the disorder prevents him from differentiating between textures and impedes his motor skill development. He can’t walk but pushes himself on his bottom to move, Alexandra said.

Matthew can’t chew so at the age of 3, he still eats baby food and is still in diapers.

“He doesn’t know to tell you he’s hungry or wet,” Alexandra continued.

“He is 100 percent dependent for his daily living skills and activities,” Cynthia’s brother, Michael, said.

Matthew also has focal seizures. Michael said his eyes become frozen and even when you call his name, Matthew doesn’t respond. The episode ends with Matthew vomiting and then falling asleep.

Doctors have no idea what his prognosis is, though they hope he can walk someday, Michael said. For now, Matthew can use a walker, almost like an infant walker to move about.

He attends a school for children with cerebal palsy, though the treatments they offer aren’t expected to help him.

Two specialists, one in Delaware and the other in Chicago, are consulting on his condition. They are the only two known experts for the disorder, Michael said. Both agreed, when Matthew was 4 months old, the child should undergo early intervention therapies. Matthew receives physical, speech and occupation therapy.

He attended a summer school program for about three months last year, which cost around $3,000. Tuition wasn’t covered by insurance, Michael said.

His parents have a van but it isn’t handicap accessible, making it difficult to lift the growing boy into and out of the vehicle. Cynthia and Jonathan have to lift him into and out of the bath tub. Retrofitting the family van and tub is also not covered by insurance.

The family is on a list for a service dog that will likely cost them $15,000. The dog is also not covered by insurance but will help alert Matthew’s family to when the boy will take a seizure.

Michael and Alexandra Sr. bought him a wheelchair for $5,000, however being that it’s not motorized, Matthew relies on his parents to wheel him around. The insurance company said they would buy the wheels for Matthew but not the chair.

Michael said he became frustrated after hearing the insurance company tell his sister and nephew no, time and again.

“It’s just so frustrating to see. You would think because his condition is so rare insurance would cover expenses. It’s appalling that it’s just the opposite,” Michael said.

Uncle Michael sending help

His disgust with the insurance situation prompted Michael to organize fundraisers to support his nephew.

Michael said he is amazed at how Matthew’s parents take care of their family’s challenging life. Matthew has a sister, Morgan Elizabeth, 5, and a brother, Adam Patrick, 1.

The entire Hadzick family is pulling together to help Matthew live a better life. They hope the community does too.

Uncle Nathan Hadzick and his family from Lancaster will make the trip in and uncle Jeremy Hadzick, who serves in the Air Force, will be there in heart. Jeremy is stationed in South Carolina and can’t make the trip in for the fundraisers.

Michael also took his nephew’s fundraisers to another level.

As an infant, Matthew seemed very normal. His mother, a pediatric nurse practitioner, saw a change in a few months. Alexandra said when Cynthia put her hand on Matthew’s hand or foot, he didn’t curl his fingers or toes like other babies. Worried, she sought medical treatment.

Michael wanted to ensure that another mother and father won’t have to deal with the stress of being told no by an insurance company on top of the stress of knowing your child needs help.

He wrote to the governors of Pennsylvania and Florida to help the National Organization for Rare Disease in its quest to raise awareness. Michael said both states now recognize there is a problem.

The hope is that one day these diseases will be recognized by insurance companies, as well.

achristman@standardspeaker.com