I’m running this fundraiser for my dear friends Hilary and Joy and their son Joshua. They’ve met many challenges and coped with the sometimes-extraordinary costs of raising an exceptional child over the years but when Hilary told me about what they are facing now, I offered to launch a GoFundMe campaign. Here is their story in Hilary’s words:

"But I'll be able to walk again, won't I?"

 

My son's question to our local surgeon cracked my heart open. When she hummed and hahhed and avoided answering, my heart broke entirely.

 

Joshua was born with cerebral palsy (CP) and is autistic. Against all odds and predictions, Joshua learned to walk at age seven after a surgery in New Jersey and hundreds of hours of Anat Baniel Method lessons.

 

He took his first steps at his after-school program, and the kids around him started to shout, "Joshua's walking! He's walking!" They knew a miracle when they saw one. Joshua seemed to take the change in stride, and I never knew how vitally important it was to him until he sought this reassurance from the surgeon in December. She had just diagnosed him with Patella Alta (a fancy way to say high kneecaps) following three knee dislocations in four months, the last one in bed while he was sleeping.

 

Patella Alta is common among people with CP, whose spastic quadriceps pull on the kneecap hard and regularly. This constant pulling stretches the patellar tendon so that the kneecap moves from its usual resting place to high above the joint, where it becomes susceptible to further dislocation.

 

The surgeon explained that she would split the patellar tendon in three and use those three pieces to pull the kneecap back to where it belongs. It would put a stop, at least temporarily, to the knee dislocations, but she couldn't guarantee much beyond that. He might not walk again and dislocations were going to be a new risk in our lives. She said she'd see us again in a few months and then book his surgery. However, due to the strain of COVID-19 on our medical system, no one could say when that surgery might happen.

 

I don't do resignation well, and I was determined to find a better alternative for Joshua, so I reached out to the surgeon in New Jersey who had first helped him to walk in 2013. He proposed a quadricepplasty to address the spasticity causing the pull on the kneecap and the dislocations. Functional outcomes from the surgery are excellent, and Josh could be weight bearing on that leg just days after surgery. Also, the fact that the surgery would address the cause (quadricep spasticity) rather than the symptom made much more sense to us. All this came with the equally good news that they can operate in early March.

 

Since then, we've embarked on a whirlwind of changes to reduce the demands on Joshua's knees in our living environment, in the hopes of preventing dislocations of his other knee (which also has a high kneecap) and to keep the demands down on the knee that will be operated on. Our biggest investment will be an accessible van with a ramp so that he can enter and ride in his wheelchair and no longer have to bend his knees beyond their comfort point while in the car.

 

And we've booked his surgery in New Jersey.

 

The costs of all of this are staggering. The wheelchair van is over $100,000, we will need a stairlift for $15,000, the surgery and associated travel costs will be at least $50,000, and the list goes on. With all of the adaptations and new equipment, we're looking at a total cost of nearly $200,000.

 

We do not fit the criteria for the support of any charitable organizations, so we need to cover these costs on our own. We've already been tapping our home equity and retirement savings to help with the ongoing expenses of life with a child whose needs are exceptional, and we will do whatever it takes to get him this surgery and these accommodations, but we could really use a hand. Joshua is now old enough to understand that costs in one place require sacrifices in others. He's even offered to give up walking. But that’s a sacrifice we can’t bear. If you are able to share a little of this burden, we would all be very grateful.

Note: you are welcome to contact Hilary and Joy if you wish to contribute directly to them.