Jordan just turned 5 years old on August 21, 2018. He was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 at 14 months old. SMA is one of the many genetic diseases that falls under Muscular Dystrophy. SMA patients are lacking certain proteins necessary to develop and grow healthy muscles. There are three (3) types of SMA with type 1 being the most deadliest and is usually diagnosed at birth or a few weeks after birth. Type 2 is typically diagnosed between 10-14 months and the reason why so late in their development is usually, the parents are told the child is just being lazy for the explanation why the baby hasn't hit his/her milestones like holding up their head, sitting up, crawling, walking, etc. Type 3 is typically diagnosed around 3 years and older. This little guy has never really crawled and has NEVER walked. He relies on his power wheelchair to get around. Spinal Muscular Atrophy robs these children of the ability to walk, eat properly, and use any of their muscles in a typical way. Simple tasks able bodied people take for granted such as coughing, blowing their nose, scratching an itch is extremely problematic and in most cases, unattainable to perform for the person with SMA. With respiratory issues being the #1 problem with SMA, the use of breathing machines daily is also a necessity. Jordan has numerous doctor's appointments that he has to go to on a near monthly basis. You name the "-ologist" Jordan has one. Pulmonologist, Neurologist, Gastroenterologist, and Physical Therapists.
With all of Jordan's appointments and in general having to go to the store, school, his big brother's soccer games, and the occasional trip to his grandmother and great grandparents homes, it is extremely difficult to load all of the necessary items for each location. For visits more than eight hours, his stander has to go with. And regardless of where else he may travel to, his breathing machine/nebulizer and cough assist and feeding tube machinery MUST go with.
It was easier when he was smaller to just take his custom made stroller to move him without carrying him. SMA patients fatigue very easily and when carrying them, it is all "dead weight". But, he had to rely on the person pushing his stroller to take him where his little legs couldn't. As he learned how to use his electric wheelchair, he craves that freedom and honestly, he deserves it! However, my car is not equipped to carry his wheelchair AND all of his medical equipment. Now that he doesn't fit properly in his stroller and he may or may not receive a larger one from the state agencies helping to provide all of his necessary gear. He cannot be placed in an ordinary stroller due to his condition. This poor boy needs a van! Jordan is the most outgoing, charismatic kid around, putting a smile on anyone’s face he comes in contact with. He makes friends everywhere he goes and will tell you stories all day if you let him. He wants to be able to take his chair with him when he leaves the house.
The hefty cost of a handicap accessible vehicle to transport Jordan’s chair is the only thing holding back more independence for him. We (my step mom and I) are setting up this fundraiser to help with the purchase of a vehicle to provide Jordan with the best life he can lead given his circumstances. We have looked into SUVs and putting the chair in the back, but that solution would only be temporary as the bigger he gets the more he will need to ride in his chair while being transported. I am a single mom and having to devote 100% of my time to Jordan’s condition due to the amount of care he requires daily, working full time or just working is not an option with all of the physical therapy I have to help him with at least six (6) times a day, when he gets sick, he is out of commission for no less than two (2) weeks and due to his inability to eat properly, I have to hook up his feeding tube several times a day. And of course, there is always a few doctors appointments I have to take him to. I have been doing this alone for 4 years, now. I have exhausted all of my savings and have a very small circle of support. I simply cannot afford a vehicle while having a mortgage and other expenses. Jordan’s older brother Lucas has been a major help in our little family and he would love nothing more than to see his brother be able to drive his chair wherever he wants to.
We are hoping to raise enough money by the end of October 2018 to submit a good down payment towards a new or like new handicap van. My dad and step mom are retired military and are on a fixed income so getting a decent down payment would help immensely!
Please, if you can spare a few extra bucks, it would mean the world to me and for Jordan, it will mean the universe! If our goal is met and there is extra left over, I swear, I will donate the remaining money to another family with disabled children in need!
Thank you for taking the time to read! Thank you for donating! Please share on your social networks! And please, keep the positive thoughts up for little man.
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- Deborah Sievert
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