When Rio was born he was the most beautiful baby . quite soon I knew as a mother to 2 other boys something wasn’t quite right . He had very noisy breathing and wouldn’t feed, I was up and down to Sheffield Children’s hospital .They admitted Rio and put a feeding tube in and did his first operation on his airways, he had a floppy airway. Whilst in hospital we had many doctors coming up to see Rio about his silver hair colour and Rio wasn’t following with his eyes as he should be, we were later told he had albinism and would be blind. Rio came home at 4 weeks old with a feeding tube in place. A couple of nights later my husband went to work on nights and I was giving Rio his last tube feed when I looked down and he had gone blue, my baby wasn’t breathing and I had to call 999 and they told me how to resuscitate the scariest thing I have ever had to do, I did it I brought him back to life the ambulance came and we had to stay in hospital. They said he had refluxed on his milk and that’s what caused him to drown on his feed, he went to theatre as he had vocal cord paralysis and would need a tracheotomy.
This was put in when Rio was 7 weeks old and he came out when he was 2 . In the mean time it came back Rio had Angelman syndrome, then just before his 3rd birthday he started fitting and was in status and was diagnosed with eliepsy . This is just a short paragraph of Rio's life, some of things he has overcome are amazing from burst arteries in his mouth and nearly losing him for the second time , to having seizure’s and hoping your child will come out of them, to then get Todd’s syndrome after that paralysis one side of your face , to the be told when he’s 7 he also has another syndrome on top of everything else syngap1 . So my boy is unique he’s the only one in the world with both , he truly is amazing 💙💙