Diagnosed at 10.5 months with astrocytoma spinal cord tumors, and having relapsed twice, Declan has had two major spinal cord surgeries, and high dose radiation and has had 14 major surgeries and over 60 procedures. He has spent his entire 11 years of life in and out of the hospital (over 800 days spent in the hospital). Declan has had multiple other surgeries, including a mitrofanoff, cecostomy button, muscle lengthening, and finger amputation. He is considered a paraplegic. It hasn’t been an easy road, but he continues to do it with a smile and brave face.
His greatest love (other than sledgehockey) is camping. He was graciously given a tent trailer so he could escape away and do what he loves. He is absolutely ecstatic about his gift, as is his family. They were able to try it out and unfortunately discovered with all of his needs the tent trailer is just not going to work for Declan. Without getting into too much detail, Declan requires alot of bathroom care and privacy for 1.5 hours every morning, as well as help throughout the day with his toileting needs. He also requires an a/c, as he has horners syndrome, a condition in which prevents his body from cooling itself down and can result in seizures should he overheat. Also the width of the tent trailer door isn’t quite wide enough to fit his wheel chair inside whereas with a larger travel trailer it will fit!
It is for these reasons that we want to get Declan into a travel trailer, with air conditioning and a fully functions bathroom, to help him go camping and have fun!
Thanks for you time! LETS DO THIS!
- Robert Minarchi
- Bartosz Lawczynski
- Paul Charlier
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