BiographyCohen was induced 10 days early, he wasn't breathing but luckily the little fighter was okay. Cohen had ambulances for quite a lot due to his breathing pattern and ribs going in which was eventually diagnosed as pulmonary stenosis. He wasn’t reaching his milestones, he didn’t crawl, sit up, walk or talk when expected. Everything has been a challenge for him to achieve. He has fought so hard to catch up, but since he’s been able to express himself more he’s figured out his own way of explaining things.
I always knew he wasn’t a good walker, he got out of breath so easily. At the park whilst the other children played he used to sit down and relax. He’s recently pointed out chest pains and in his own way told me his legs and back were hurting which has turned out to be a hyper-mobility problem. He’s in a world of his own most of the time but I’ve never met a happier little boy, with all of his problems he hardly ever complains. We’ve recently starting using aids like special cutlery and pencil grips. He can’t write yet but is slowly learning.
He’s got to the age where some children have started to notice he’s a bit different because he will repeat words constantly and fixate on certain things sometimes. He’s so forgiving and would play with everyone, he sees no bad in anyone.
It’s difficult with all his appointments and explaining what they are for like sleep machines, blood tests, heart scans and eye drops to help with his squint surgery that’s due soon. I can’t explain it properly because he doesn't understand like children his age should so sometimes it can be quite scary for him. He loves his cuddles and is always attached and loving someone which makes him feel better.
I’m glad he’s finally been diagnosed with Noonan Syndrome because he’s getting the help/extra support he deserves to thrive! Noonan Syndrome is such a complex disorder, there’s many other things that go wrong with him or little blips he has because of it but he always pushes through.
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