BiographyStevie was born in March 2011 after a uneventful pregnancy. He was an incredibly unsettled baby right from the start and spent much of his early weeks screaming. Our health visitor became increasingly concerned with each visit as he never seemed contented. When he was 6 weeks old during the bank holiday weekend we rushed him to A&E after he had been crying all day, his tummy has distended and his skin had developed a mottled appearance. During this visit he was seen by 2 doctors who both diagnosed him with silent reflux and he was medicated straight away. At 5 months old his silent reflux turned to classic reflux and he spent the next 6 months vomiting after every feed. Thankfully it didn't seem to bother him too much and he continued to grow and gain weight but it was difficult for us to cope with each day.
He met all of his early milestones, sitting at 6 months and walking just after his 1st birthday and it wasn't until he was about 15 months that we started to suspect there was something wrong. He wasn't responding to his name and was showing signs of repetitive behaviour. He couldn't sit still for a second and his arms were constantly flapping. At 19 months I approached our health visitor and raised concerns, at this point he wasn't making eye contact and hadn't begun babbling or making any attempts at starting to talk. He was also having what we suspected were absent seizures. Thankfully she took us seriously straight away and made referrals to various professionals. A few months later Stevie began having speech and language therapy and play sessions with a portage worker. It soon became clear to them (and us) that there was more going on and he was soon referred to the Child Development Service for a full assessment.
Stevie started attending a specialist nursery (attached to our local special school) when he was 2 and a half. It was there that further assessments were done and a week after his 3rd birthday he received a diagnosis of autism and severe learning disabilities. His paediatrician always suspected that there was an underlying genetic cause for his difficulties as Stevie is noted to have some dysmorphic facial features, so were soon offered genetic testing. In September 2014 Stevie received a diagnosis of 2p16.3 micro deletion. It means he has a small part of his 2nd chromosome missing. This part contains a really important gene called NRXN1 which scientists know is linked to neurological and psychiatric disorders. Like other children with the same condition it was discovered that he has a heart murmur that will need to be closely monitored over the next few years. He also has vision problems. He has to wear an eye patch to try and correct a squint and glasses to improve his vision.
Stevie was non verbal until he was 4 and a half and although he has now started talking he still relies on Makaton and visual symbols to help make himself understood. The attends a wonderful specialist school where he is in a class with 8 other boys supported by 6 staff, which he absolutely loves!
That's enough about his medical conditions, now let us tell you a bit more about him. Stevie is one of the happiest boys I know, who lights up a room as soon as he walks in. He has boundless energy and is a real whirlwind. Once you've met he's hard to forget!
I've been stitching for Love Quilts since before he was born so I can't wait to finally make a square for his quilt and see what wonderful squares are made for him.
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