THE FUNDING PROJECT  •  NATIONAL CHILDREN'S FINANCIAL ADVOCACY INITIATIVE
Disability · Rare Disease · NICU · Adaptive Equipment

Matthew's Story

Matthew is 7 years old, and he has 4 rare diseases, along with a long list of more common diagnoses. He is, in his family's own words, the happiest boy ever. He isn't letting his disabilities define him. He keeps going forward, even if it means doing that in a wheelchair, adaptive bike, or walker.

This is his family's story, told in their own words.

Chromosome 8P Inverted Duplication & Deletion Agenesis of the Corpus Callosum Adrenal Insufficiency Intestinal Malrotation Cerebral Palsy Autism Hypotonia Global Delays Intellectual Disability
Matthew and his mom receiving his second adaptive bike from Project Mobility

Matthew and his mom receiving his second adaptive bike from Project Mobility

In His Family's Words

A Diagnosis Before He Was Even Born

We found out about the first rare disease, agenesis of the corpus callosum, even before his birth, and it was devastating news for us. We were told about all these complications and things he might have. Shortly after birth, this diagnosis was confirmed via MRI.

Shortly after this, he was diagnosed with the other rare diseases, all while he was in the NICU.

The hardest thing was probably getting told all these things he wouldn't be able to do and how he was going to look when he grew a little: no hair, no teeth, big ears, big nose. We left the first geneticist appointment confused, getting a booklet that was a few years old saying how bad it was going to be, along with a Facebook support group name written on a piece of paper.

Having a rare disease means there is not much information available, and often a lot of valuable information comes from other parents rather than from doctors. None of Matthew's doctors had ever seen anyone having all these diseases at once.

The hardest part was realizing and accepting the fact that doctors don't have the answers we need, and with time, I realized that there are questions I don't want answered. Living one day at a time works better for us.

“I wish I knew this when we had just gotten his first diagnosis more than 7 years ago.”
Matthew's Mom

Navigating Equipment, Insurance, and Therapies

Getting new equipment can be difficult with insurance. If you ordered a walker before the standing frame, good luck getting that stander approved, because in insurance's eyes, you can use the walker to stand, and they don't care that it is not safe for a child with this kind of disability to stand while holding on to the walker.

It's best to think carefully and plan in advance for the equipment needed in the near future, talk with all the therapists, and only order the equipment after analyzing everything very well.

Insurance Barriers

Equipment approvals depend on technicalities, not actual safety or need. Families must plan ahead and coordinate carefully with therapists before ordering any equipment.

Therapy Scheduling

Navigating the schedule, availability, and wait lists for certain specialties is another difficult challenge, a problem many families face with limited therapies per year.

Limited Information

Rare disease means limited research, limited clinical experience, and often no doctor who has seen this combination of diagnoses before. Other parents often become the most valuable source of information.

Living Without Answers

Accepting that doctors don't always have the answers, and that some questions are better left unanswered, is part of learning to live one day at a time.

Navigating therapies is another difficult thing we have to manage: the schedule, the availability, and wait lists for certain specialties. We are lucky to be able to get Matthew a somewhat good plan that allows him to have lots of therapies, but this is a problem many families have, with limited therapies they can do per year.

Matthew has been in therapy since birth. He's had thousands of hours of therapy. He's in a wheelchair full time, and every single ability he has today, he's worked extra hard for.

Who Matthew Is Today

He uses a walker for short periods of time, but he needs support even with that. He cannot communicate his needs; he is nonverbal. Matthew has a very limited diet. He cannot chew. He will only eat very thin purees and still drinks his high-calorie formula from a baby bottle.

Kids can choose if they want to walk, climb, run, jump, walk forward, backward, sideways, or ride bikes. For Matthew, and kids like him, his options are very limited: wheelchair, stroller, or bike.

Despite all this, Matthew is the happiest boy ever. He likes playing with his toys, and he enjoys bike rides.

Project Mobility · Adaptive Cycling

An Adaptive Bike Changed Everything

Being able to ride a bike feels like something simple to most people, but for those with disabilities, they are limited in what they can do. Bike riding offers them the freedom to feel like everybody else, enjoy nature, exercise, move, and just enjoy life.

Thanks to Project Mobility, Matthew got an adaptive bike TWICE! (He outgrew the first one.) Riding his bike brings so much happiness to Matthew. When I noticed the first bike would be too small for him soon, I didn't know when or if we'd be able to get him a new one. Project Mobility made this possible, so Matthew didn't have to take a break from his bike rides.

His bike is a big part of his life. Adaptive cycling allows him to become stronger, exercise those leg muscles, engage his core, and work on leg dissociation. He is so happy he gets to ride his bike along with his sister.

What Adaptive Cycling Does for Matthew

  • Builds strength
  • Exercises leg muscles
  • Engages his core
  • Works on leg dissociation
  • Provides freedom of movement
  • Creates moments of joy
  • Lets him ride alongside his sister
  • Gives him the freedom to feel like everybody else

We are extremely grateful for Project Mobility and for the TWO adaptive bikes we got from them. They made Matthew's life better! They are changing so many lives for the better!

I wish everyone would understand, especially sponsors, hospitals, and funders, what bike riding means for kids like Matthew.

“I wish everyone would understand, especially sponsors, hospitals, and funders, what bike riding means for kids like Matthew.”
Matthew's Mom

Happiness Is a Choice

I'm very proud of Matthew. Despite his disabilities and the limits he has, he enjoys his life. He is happily working every day for new abilities and to maintain the abilities he currently has.

Many people think that living a life with complex needs means you're suffering all the time and that life isn't worth living. Disability certainly comes with so many complexities, and even pain and sadness, but this isn't all.

Many people with disabilities learn to love their lives, enjoy them to the fullest, and be happy.

“Happiness is a choice even when you live with a disability.”
MAKE A DIFFERENCE

Support Families Like Matthew's

Matthew's story is just one of thousands. The Funding Project exists to help families navigate the financial and logistical challenges of complex medical journeys, so more families can access the equipment, resources, and support they need.

Support Our Mission More Family Voices