Help with the cost of a special needs wheel chair

Hi, my name is Alysha , and I am fundraising for my son Bentley. Bentley has a multitude of diagnosis and currently needs a specialized disability wheel chair which we can not afford , as they can be a few thousand dollars. He also needs Respite care , which is care giver relief and includes day programs, camps, and occasional weekends or week long visits in a developmental challenged facility. This cost alone is approximately $5000 per year, until we can get funding, but wait list are long. On going supports for him are also not covered as I do not have benefits, these include Speech, behavior, and physio therapy.

To start from the beginning, Bentley was born at 28 weeks and 6 days and in nicu for 110 days due to PPROM at 22 weeks. During a high risk pregnancy that had endless of concerns, test would always come back with something not right. His stay in nicu also wasn't uneventful with suspected infections, on cpap and ivs for months. He had a grade 3 brain bleed and was diagnosed with chronic lung disease. He also coded 3 times close to the end of his stay and went home on a feeding tube because he would barely drink a bottle and would not suck. Lots of hospital visits with pneumonia when he was a baby, once resulting in a two week stay at 9 months old at McMaster and on a ventilator for a week. Luckily he out grew his lung issues as he grew older. His pediatrician blamed all of his delays and GERD on being preemie , but as his mother I knew something was not quite right . He would take an entire hour to finish one bottle , eyes looked a little turned in , and other than holding his head up , his milestones were delayed. He crawled at 12 months and walked at 19 months. Despite all this his pediatrician thought he looked normal and that his issues were preemie related , so I had to push for genetic testing. His test came back that he has a chromosome abnormality, a deletion on the second chromosome. At the time he was the 60th person ever in the entire world to be diagnosed with this . As a baby, up until he was 3 years old he was the most content happy baby ever. He was always smiling and laughing, and would sit quiet playing for hours . He was delayed in language , at his 36 month Bailey assessment, he was just 6 months behind, speaking at the age of a 2 and a half year old . He would say 3-4 words at a time, ask a ton of repetitive questions and was able to answer in short word sentences back. At age 3 years and 4 months old Bentley had his first seizure. For the first few years after that until he was on the right medication, at least 30 ambulances were called due to him not breathing and going blue during prolonged seizures. He eventually lost all of his language and stopped using the toilet so regressed in milestones as well. Later diagnosed with epilepsy and Landau Klefiner syndrome; a rare childhood epilepsy disorder, epilepsy combined with aphasia , and then severe level 3 Autism. Around age 7, ADHD diagnosis and that's when physical and verbal aggression started . He was no longer our happy smiley Bentley. Unable to communicate has made him become increasingly frustrated. He eventually was able to learn some sign language and has made up some signs of his own, and has regained a few one words , but is still non verbal. He was also diagnosed with developmental delays and a severe intellectual disability. Countless medications and steroids did not help his ESES diagnosis that was causing epilepsy and aphasia ( Landau klefner syndrome) and his neurologist fears there is nothing left that we can do to regain his language back , and more than likely this will be permanent. On top of all this his muscles are tight, he has severe hypertonia in his legs, Kyphosis in his spine which could potentially turn into scoliosis in the future, and can not stand straight , they are slouched in an L shape, therefore, walking long distances causes too much distress for him. He will become aggravated and sit down and cry in pain. His stroller is just too small for him now, the seat belts don't fit and he's way past the weight limit with his feet touching the ground. He was recently diagnosed with bilateral radioulnar synostosis; a genetic condition where he was born with two bones in his arms fused together so he does not have full range of motion in his wrist. His aggressive behavior has gotten so bad, we cannot bring him anywhere without him screaming, hitting, punching, biting, pinching, scratching, ect , as well as he will run very fast far away. It has become too much to manage when he is running around on his freewill not listening, touching everything , throwing anything he touches, even pushing children off swings and hitting total strangers, most who are young children who do not understand his disability He has multiple siblings who are missing out on many things because we have no care for Bentley, not even day cares will take him. They don't get the attention they deserve from their parents when we are out of the house because we have to deal with Bentley every second we are out . This chair would be life altering in getting him something with a restraint so he can't run away and be a harm to himself and others. He also needs many breaks when walking due to his legs. He is much more calm in a stroller and even ask to put the seat belt on , but he has not fit in it for a few years. He will be 10 years old in November. Having this chair will help our large family be able to include Bentley in events as well as let us focus more on our other children who need us as well. We are at a breaking point and bringing him out of the house is becoming unmanageable and way to hard to deal with for even a few minutes. Thank you for taking the time to read this . Anything that surpasses the goal will go towards respite care for Bentley to attend at day programs , currently not covered, so we can occasionally do things with our other children and Bentley can have fun with wonderful people equipped to handle him. Anywhere in public included our own relatives houses, is too overwhelming for him .