Help little boy with rare disease.

We are raising money for Our little boy River, he 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 life long 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.  This is why we would love to fulfil his life with his very own service dog, companion and helper, to support River to live his life to the full.
River is non verbal, can communicate, but so sadly suffers from the life threatening type of seizures called Status Epileticus seizures were his seizures are a medical emergency. He's attended resuss too many times, first when he was only 5 weeks old. I his mother had to perform CPR on River when he was 2 years old. It was only last month he stopped breathing again in my arms due to a seizure.
He also has Central and obstructive sleep apnoea, hypermobilty syndrome, Sensoray Processing Disorder, Autism, ADHD, learning disabilities etc.
River continues to have therpies, hospital admissions, and many obstacles in life, we have both given up work to care for our son as he needs around the clock care, so we are hoping to fundraise to make this dream possible for River.
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 ressus. We want to make the most of everyday we have with him, making special memories, for him to enjoy the life to the best we can.
A therapy dog has so many things to attribute to Rivers life and development. River adores dogs, and would mean the world to us as a family to give River this happiness for all he goes through.
Despite all his challenges, he is a lovely sunny little boy, caring, and determined to fight everything life has thrown at him, he is loved by everyone who meets him. River is such an inspiration.
If you can donate any amount to help us, we thank you so very much.
River's Family.

Please click below on the txt to see a short video clip that explains more about River when he was on TV. 
River on TV, North West tonight


Because River has been reviewed and sadly Rivers seizures are too complex to train an alert dog, our next step is to raise money for a service/ highly trained dog as companion and guide. Along with all the other expensive equipment, medical Supplies and needs River has to help support River throughout his life. We are always faced with needing extra money to support River so will continue to fundraise to make his life the best it can be. Thank you for everyone's support so far, it means a lot to our family.

Imagine...

Imagine being told your child is seriously ill.

Imagine crying until you think there's nothing left.

Imagine feeling like you've been punched in the stomach and wandering the hospital corridors, as if your life was on pause for days on end, weeks, months, not able to comprehend what is happening.

Imagine having to hand over your child to surgeons and waiting...

Imagine seeing your child resuscitated and been so close to leaving you over and over again.

Imagine the terror...

Standing by as your baby's body is pumped full of medication.

Imagine holding your baby down countless times while someone sticks needles in them while they scream.

Imagine the guilt....

Imagine holding back the tears when your other children are left at home, while your blue lighted off on red alert in an ambulance to ressus.

Imagine not being able to leave the house for fear of infection.

Imagine it being so difficult to keep plans apart from hospital visits.

Imagine being stuck in isolation and not see anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine the loneliness...

Imagine perfect strangers passing comment about your son.

But with the emptiness ...

Imagine the kindness of strangers who don't know you.

Imagine the incredible support from people you've never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it's back.

Imagine how fragile and precious life feels.

Imagine... Don't pity, don't sympathise, just spread awareness and just imagine because it could happen to anyone ❤️