An open letter for inclusion. A plea for help.

We are writing this letter because we don’t know what else to do. We are desperate, and time is running out.

Our son, Noah Mota is a twice cancer survivor who, as a result of his illness, was left with a spinal cord injury and paralyzed from the chest down. It all happened before he ever took his first step. First when he was 2 months old, then when he was 5 months old. The second time it was devastating: Noah was in Pediatric Intensive Care at SickKids for 4 weeks. As chemotherapy drugs and steroids were pumped through his veins in an attempt to stop the cancer and revert his paralysis, we took turns at his side, helplessly watching his agonizing eyes tear up and cry as nurses inserted foot-long tubes into his nose and down his throat, to suction excess fluid as he battled pneumonia. He could not utter a single sound. His vocal cords were blocked. His cries were silent yet painful. You could see it in his eyes. He had fevers and infections due to his compromised immune system. But he made it. He survived. Nothing stops him.

March of 2019 marked 3 years since that fateful day. Noah is a cheerful little boy, who army-crawls around the house, uses his wheelchair (since he was 1.5 years old) to get around and is extremely smart. He has never walked. But that never stops him.

His medical needs are complex, yet you wouldn’t know from just looking at him. There are the obvious ones: He requires transfers to/from his wheelchair and the various other rehabilitation equipment (stander, treadmill, KAFOs) as he is too young to have the dexterity or strength to do it on his own; He also needs transfers to and from his bed, a change table, the bath.

Then there are the not so obvious ones: He requires intermittent catheterization as he is unable to void on his own due to a neurogenic bladder (very common in spinal cord injury patients). This is to avoid UTIs, which he has had countless times, and to prevent urine from traveling back to his kidneys and potentially damaging them. He also has difficulties voiding his bowels and has to wear a diaper. That never stops him.

He has no feeling below his level of injury, about chest high. He has had multiple fractures, on both femurs and his tibia bones — osteoporosis is unfortunately a side effect of chemotherapy and steroid therapy. Because he never walked, his bones never developed the normal density and strength of a normal child. His leg bones are very weak. He has had to wear awkward casts 3 times so far in his short life, including one that wrapped around his hips and leg, from hip to ankle. Just recently he developed stress fractures on both lower legs. That never stops him.

Noah is otherwise a “healthy” child. He has normal cognition and brain function, full use of his upper body (from the chest up — he still needs to brace himself with his arms on the ground to be able to sit and requires a special tomato chair, with a harness to sit at a table) and the most positive attitude of anyone we know. We go on vacations, we go on walks, we take him to the playground, we let him play on the grass. He has his favorite toys (cars), he cries when he is upset and he laughs when he tells us jokes (believe me, he is a funny boy). We try our best to give him a normal life. Nothing stops him.

For almost 4 years now we have been living on single income, with the tremendous burden of medical expenses that are not always covered by insurance, including out of pocket rehabilitation therapy in the US (they’re not available in Canada), to try and keep his leg muscles and bones from atrophying/deteriorating further, and the hope that one day he will be able to regain some use of his legs. He is still young. There is hope. Nothing stops him.

This fall will be the next scariest time for us: he is going to school. We are not afraid because he may not do well, or be accepted by his peers, or that he might get sick. We do worry about that too, but what we are really worried about is that we cannot count on the city/province/country/school board to provide for his medical needs. Although the school is committed and is working on making the necessary provisions for his care, that care is limited to school hours (8:30am – 3pm). We want Noah to be fully integrated and a part of his peer group, not only during school hours but also during before/after school care, summer camps, PA days. We don’t want him to be discriminated against because of his medical needs. This care is necessary for us to be able to raise Noah in a healthy, loving home that can provide for his needs. We (mother and father) both need to work full time to provide for our family. And we want Noah to be with his friends, no matter when or where. He wants to be with his friends.

Noah requires medical care. He needs help with transfers, he needs help with catheterizations. He needs help on steep hills! His wheelchair weighs as much as him and although he does an amazing job on flat surfaces, he is still too little to conquer hills (not for a lack of trying, believe me!). He would also require the occasional diaper change.

We have been told that care is not available outside school hours. It is not that they don’t want to help – they just don’t know how. And we were told it is now on us to find that care for Noah.

We have been reaching out to all organizations we know, looking for help: additional funding for extended respite relief, complex medical care funding/assistance, CCAC/LIHN. We even reached out to the human rights commission. So far, we haven’t found a solution.

Without this support, Noah would suffer from not being able to participate in inclusive activities with his friends. It would be discrimination.

Our concerns are not only financial. We are very concerned for our and Noah’s mental health. The anxiety that this situation has brought upon us, as well as the sense of helplessness is almost unbearable. Being in a privileged, wealthy country, yet one that has no inclusivity solution for someone like Noah is a terrifying thought. It is impossible to understand. And the most important thing: Noah knowing he is accepted and included, not feeling discriminated against because he has had a terrible disease, one that he has had no say in is critical in his personal development. To be told “no” because he is different would simply be unacceptable. Noah defeated cancer, twice.

Noah wasn’t given a choice or a say in having cancer. He wasn’t given a choice or a say in becoming physically disabled. We, however, have a choice. As a society, as a government, as humans, we must make the right choice, to help Noah. We must help him exactly because he had no choice. We will not allow our child to grow up in a society where his handicap will punish him and restrict his potential. He deserves better. We all owe him to be better than that. This should not stop him.

If there is any way you can help us, we would be forever grateful.

 

 

http://thinkboundless.org

 

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