River W

28 October 2017

Please do not send small items River can put in his mouth or latex balloons (he doesn’t have an allergy but they are dangerous to him).

Our little boy River is now 7 years old and suffers from a life-threatening condition. He has an extremely rare mutation on his CNK SR2 gene. There is no cure!  River will need 24/7 lifelong care and he will never really have friends he can play with or share his life with because he will never have his own independence.

River is non-verbal, but can communicate. He sadly suffers from a life threatening type of seizures, status epilepticus, which are a medical emergency. He’s attended resus too many times – first when he was only 5 weeks old. I (his Mum) had to perform CPR on River when he was 2 years old and many times since. It was only last month he stopped breathing again in my arms due to a seizure. He also has central and obstructive sleep apnoea, hypermobility syndrome, sensory processing disorder, autism, ADHD, learning disabilities etc.
All we can do is hope and pray our River makes it into adulthood, as we have nearly lost him so many times: he’s often blue lighted to resus. We want to make the most of every day we have with him, making special memories and for him to enjoy his life to the best he can.

Despite all his challenges, he is a lovely sunny little boy, caring, determined to fight everything life has thrown at him, and he is loved by everyone who meets him. River is such an inspiration.

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