04/08/2024
Just wanted to write a brief update to let everyone know the new needs Joshua has & what we’re fighting for him to revive to continue in his recovery. Joshua has recovered so much! A million more than ever predicted my physicians but we are under the care of the Great Physician! God has put so many wonderful caregivers, doctors & therapists in our path to continue the total healing for Joshua. Unfortunately, these things take money & insurance doesn’t cover most of Joshua’s needs to get better. Basically if you’re breathing that’s all you’re entitled to. So, we will fight for things to change for future children like Joshua & pray that insurance will begin to cover life healing treatments & necessarily equipment for them & work for Joshua to recover.
Joshua will be receiving his 7th stem cell treatment which costs $3840 & we will have another every six months. Travel is about $1500 for this trip.
Joshua will be getting his new AFOs (ankle foot orthotics) which help him to walk next week. Insurance does pay a portion. Our part is approximately $600.
We are fighting for him to get an eye gaze device which will allow him to communicate as well as play games & control electronics at the house all with the gaze of his eyes. We aren’t sure the cost yet, these are very expensive however insurance should cover at least a portion. 🤞
He also met with physical therapy & the DME (durable medical equipment) provider today to get the process rolling for a safe bed for him. His secondary insurance will not cover this bed, however we are hoping his primary will cover a major portion if not all. It is a 50-50 chance so all prayers appreciated.
Joshua will also need a new stroller soon, the last two we had to purchase out of pocket. These are about $3,000 average for easier transport on flights small trips etc & all transporting until we get a wheelchair accessible vehicle.
The biggest expense right now is transportation. Joshua currently doesn’t use his wheelchair for multiple reasons but the biggest being that we have no way to transport the wheelchair. The wheelchair currently doesn’t fit in my vehicle even for transport. We have plans for Joshua to be starting some activities that will make him more active but he needs to be in the wheelchair for these to happen as well as the there are devices that are made to attach his eye gaze device directly to his wheelchair for easier access. These vehicles are in excess of $75,000+ brand new. Due to the miles we travel each month for Joshua’s therapy & care (some months in excess of 4,000 miles) it would be nice to have new, but we are trying to be realistic. We would purchase a used vehicle which would still cost $40,000-$50,000. We have to purchase a vehicle with very low miles due to the fact we put 80,000-100,000 miles per year on them for therapy & appointments. The last regular van we had had two transmissions go out within a year because of the mileage so therefore we can’t purchase something with 80,000 miles already on it & put the heavy milage on it that we do. There is no insurance help for this. We are looking for grants but even if we receive them they are small & don’t begin to cover the cost. I also will be putting my own money towards this to cover the cost, however the cost is just too great for me to cover it all. To help cover this cost we have set up a GoFundMe every dollar of this GoFundMe will go directly to the purchase of a vehicle to transport Joshua.
You can donate here: https://gofund.me/2aaf64c9
If you’d like to donate towards the stem cells or any other equipment you can write a check to the Tonya Nesselrodt with Joshua Shirk Medical Trust in the memo. It can be mailed to PO Box 902, Petersburg, WV 26847 or deposited into Summit Community Bank into the Joshua Shirk Medical Trust account.
Your unwavering support is appreciated more than words can say. May God richly bless each of you. Please keep praying. Your prayers are still working!
We also appreciate any information on grants or organizations that you have had success with in the past for us to receive funding.