Gian suffered from oxygen deprivation (he is our miracle baby) due to problems during birth and being born from an emergency c-section.
It was at the age of 18 months, when Gian started to show regression, that he had his first seizure. It lasted 16 minutes. So many tests were performed including MRI's and a Neuro Scan, 2 Spinal Taps. Doctors really didn't know how to tell us his results, demyelination disease. This is a regressive disease due to no oxygen permanent loss of brain cells. Also known as Hellers Syndrome (CDD) This also causes regression from things learned. Cerebral Palsy, Epilepsy, Autism Spectrum Disorder, Todd's Paralysis along with Speech Impairment and Orthopedic Impairment as a result of demyelination in his brain. Gian had several seizures after that, all being more intense and lasting longer. He has had anywhere from 30 minute seizures to Grand Mal Seizures lasting over 3 hours. That seizure left doctors unsure if he was going to make it. That seizure put Gian in a coma, caused lack of oxygen, and regression in his ability to perform everyday things. For example; talking, standing, holding a spoon, simple things that you and I can do.
He's had life in rough, but he is resilient and strong . He has suffered from pulmonary and bronchial issues since birth and in late 2015 we got the news that he had scoliosis at a C curve of 44 degrees, affecting his ability to breath and sit properly, it also restricted him from receiving the proper amount of oxygen. His organs also were being impacted and starting to fail. In early 2016 we were given the news that he needed emergency Spinal Fusion Surgery. He has lived as normal a life as we could possibly give him. If this surgery did not take place Gian would have been left severely deformed and eventually would have resulted in fatal circumstances. His surgery was a success. Unfortunately now Gian is unable to stand, take short steps and or walk, he is now 100% wheelchair bound.
The pulmonary issues even with his Spinal Surgery and correction of his scoliosis have continued. He has now been diagnosed with Chronic Lung Disease. Constant hospitalizations, emergency room visits, bronchial infections and pneumonia (about 4 a yr). He recently started having problems eating regular foods. On December 15, 2017 he had emergency Gastrostomy Surgery (G-Tube placement). He was diagnosed with Silent Aspirations. He now feeds through a G Tube placed on his Stomach. He is no longer able to intake food or liquids by mouth. The location on his stomach where the feeding tube is makes it even more difficult to pick him up, lift him inside the car.
Why they need a wheelchair accessible van?
My daughter Jaimie is a full time working single mom, with a one income home. Gian and her unfortunately have no other source of income. For the past 10 years we have had to not only transfer him (currently 125 lbs) into our vehicle but also lift his wheelchair up (80 lbs) into our vehicle. My daughter suffers from back issues due to the daily lifting of him into the car and into his wheelchair. This is done several times a day when he is able to attend school and several times a week for appointments and therapy. He receives no transportation because it is a charter school for disabilities not within the bus route.
He has gotten too big and the risk of him being injured, due to his back and now his G Tube, have become higher. She has tripped and fallen trying to do these things with him. We have to pick him up out of the wheelchair, lift him into the car. We have to also take his wheelchair apart so we can put it in the back of car. The same process takes place to take him out of the car. It takes us about 15 to 20 minutes to get him or out of her car, If it's raining we have to wait for it to stop before we can load or unload him from the car. They get soaked even with umbrellas. Gian's insurance is a amazing, they cover all his medication which run about $3,000 a month and the equipment he requires. This year alone his medical equipment has totalled over $12,000. His surgeries cost over $130,00 and his annual cost of feeding will range about $32,000 per year with the G Tube. However great his insurance is they do not give any assistance towards accessible vans. A brand new van with a wheelchair ramp conversion could cost anywhere from $30,000-$65,000.
How it would a wheelchair accessible van impact Gian and our family?
Gian would not be at risk of further injury to his back or his G Tube. He would no longer need to be lifted so much. Lifting him so many times a day causes his body to ache and become sore. Sometimes even leaving bruises. The transfers, diaper changes, lifting and loading him into the car, lifting and transporting his wheelchair are all becoming more and more difficult as he continues to grow. During longer trips he would be more comfortable and have better head support that his wheelchair gives him. He could stay in his wheelchair. He would be all around much happier.
Gian can't hold himself up and requires an easier way to get him where he needs to go. To be honest there are a lot of times that we don't go places with our family because of weather, space, parking or all the effort required, even though Gian loves to be out and about. That means someone, usually me or his aunt, stays home with him so daily things like groceries or errands can be done. That makes me, his aunt and his mom sad because he misses out on family time, activities, birthday parties and overall being together. It always takes two people to get him into the car and to any appointments.
It would be a blessing getting us where we need to go, as a family!
Their lives without a proper accessible vehicle make it very difficult to get Gian to school and therapy. This situation is unfair beyond words. Please help with any amount you can.
My daughter has applied for grants and aid but has had no luck. Having help towards covering the costs would be such a blessing and possitive impact Gian's and our lives. Your help, whatever it may be, big or small, means bringing comfort and joy to one of the most deserving mommy and son in the world.
Please consider helping Gian, a little boy who with his love and smile brings joy and happiness every single day to our family and everyone he meets.
- Lovye Allen
- Jose Soto Roman
- Barbara Norl
- Carrie Dowell
- Debbie Campbell
Organizer and beneficiary
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