Adaptive van for Nick

Please help Nicholas' family afford a van so he can be safely transported when they need to leave the home.

Adaptive vans are needed to  safely transport medically complex and physically disabled people to and from doctor’s and therapy appointments. It also helps them have the ability to experience life outside of the home.

Nicholas is a two year old deeply affected by cerebral palsy. He can't do things like sit up without assistance, lift his arms or push up to help those caring for him move him from place to place. He's a tall boy for his age and the risk of injury is high for both him and caregivers. Getting a van with the right equipment will help transfer him more safely than out of a car seat in a typical vehicle. Kids like Nick have bulky, heavy medical equipment, and if it's not used as intended, expensive repairs are needed. This happens when components that aren't intended to be broken apart need to be in order to fit into a car to go to multiple appointments, sometimes in the same day. Nick's family has some important visits to the Seattle Children's Hospital scheduled later in the summer with  specialists and they have to bring equipment that doesn't fit in their car.

Nick's family will soon be selling their small SUV and hope to buy an adaptive van, but they need your help.

RECENT VISIT TO DEALER TO SEE HOW NICK'S CHAIR FITS

This is Nick's story, told by his Mom and Dad:

In June of 2016, my husband and I received a phone call that a little boy was born many states away to an unprepared mother and that the baby needed a family. We had been chosen for the task if we could quickly decide to take him. After a surprisingly short discussion and a long flight to meet him, it was obvious that Nick was meant to be our son. Because we had gotten him "overnight", our community rallied around us and started delivering clothing, strollers, a crib; almost everything we needed showed up miraculously at our doorstep in those early days.

A few short months later, our perfect baby started to slip in meeting milestones and started exhibiting what medical professionals called "hypertonicity". He was unable to turn his head easily to the left and his leg and arm muscles were consistently tight. He also started having issues bottle feeding and he barely slept. 

The hardest part about the first few months was not knowing what was happening with him and feeling like we weren't giving him what he needed. Typical new parents, right? What we didn't know at that time is that Nick's brain had suffered a stroke early on in the pregnancy and he had a condition called bilateral schizencephaly  with polymicrogyria . When we received his diagnosis at 6 months of age, we were told that he probably wouldn't walk and that controlling his seizures and muscle tone would be life-saving as he grew.

NICK'S FIRST EEG, WHERE HIS SEIZURE DISORDER WAS CONFIRMED

The first year of his life was deeply disorienting for us and filled with hospital admissions, trips to the ER, trials and errors with feeding tubes, procedures, tests, sleepless nights and mastering a whole new vocabulary. We learned the difference between OT and PT, balanced appointments in the home and in-clinic and we signed him up for every service we could afford, leveraging the Early Intervention's Birth to 3 services. As his mother, I was unable to return to work and filled my time with going to support groups, hiring dependable caregivers and even attending seminars about neuroplasticity. Kids like Nick need help re-wiring the brain to use their muscles, including those supporting vision, so they can have hope for some sort of "normal" life.

NICK AFTER HIS FIRST MEDICAL PROCEDURE TO GET A FEEDING TUBE, HELD BY DAD

As symptoms of his brain disorder, Nick has cerebral palsy, intractable epilepsy, cortical vision impairment and other symptoms like trouble swallowing and digesting food. He doesn't use any words to communicate. He's followed by over 15 doctors and we see 6 therapists - Occupational Therapists, Physical Therapists, Vision Therapists - either weekly or monthly either in our home or in clinics.

What my husband's health insurance doesn't cover has been paid out of pocket so far. Big expenses are looming because he's such a big boy and because he can't help us move him at all.  Expensive things like adding tracks in the ceiling to support his weight as we move him safely from one room to an adaptive bathroom - not yet built - or removing steps and replacing them with ramps to roll his chair. We need to find a space in home to accommodate durable medical equipment like his activity chair, an adaptive stroller or foam wedges to support him during vision therapy. He'll soon get a "stander" to help him bear weight so his hips can develop enough to avoid surgery.

TWO OF THE PIECES OF LARGE EQUIPMENT WE NEED TO TRANSPORT

The tricky thing about medical equipment is that it's bulky and heavy. Not only do we need to protect our bodies as he grows but we need to protect the integrity of the equipment by not breaking it down when it needs to go with him to appointments. The retail cost of one of his pieces of equipment alone is over $7,000 and if it breaks, there are limited options for loaners. The process of getting the blue chair in the picture above through the local children's hospital, including insurance approvals, took almost 7 months!

We've waited as long as possible to buy an adaptive van to safely transport Nick and his heavy medical equipment. Soon, he won't sit in a car seat and instead, his chair will be strapped down inside a van for transport. By purchasing a properly adapted one, we'll be able to roll Nick into it and reduce unnecessary wear and tear on the chairs. 

If you have ever shopped for a van, you know that they can be costly. If you add the conversion package, the cost is between $60,000 to $80,000 for a new one. The conversion offers essential features for families like ours, like:

-    A wheelchair ramp that automatically retracts from the vehicle after the van is lowered closer to the ground. You might have seen this with buses being lowered to accommodate a passenger with physical limitations. 
-    Modular seating that can be easily removed to add space for large equipment or a disabled passenger in the front when they're old enough. Why should a person who would typically ride up front be pushed to the back of a van simply because they can't open a door and sit in the front seat?
-    Illumination on the floors to see where you're working on tying down chairs or when you drop things like syringes while meds are administered.

We've been setting aside money to buy the van but other expenses are adding up:  adapting our home, hiring additional caregivers so we can both work to afford therapies and treatments. So, we're asking for some help. We're lucky to have a fair, family-run and owned local dealership  in our area but we really need some help putting part of the money down to be able to afford the monthly payment.

It's very hard to ask for help so publicly but we've been encouraged to do so by some of his doctors and therapists and we all need help from time to time.

Thank you listening to our family's story and for your support. Even if you can't contribute financially, sharing our story with your friends and family or leaving a kind note is always appreciated. You can share the link by email, phone, Facebook or Twitter:  www.gofundme.com/VanforNick. Or, you can just use" share buttons" and mention why Nick's story inspired you to donate or share.

Thank you again,
Nick's Mom and Dad, Nick J.