Family fundraise for baby River’s future

Chris, Jeni and baby River

2 More Image(s) In Gallery

The family of a five and a half month old baby are fundraising to help their son have the best future possible.

River Wardley was just four days old when his parents, Jeni Ray, 30, and Chris Wardley, 28, thought there was something wrong with their baby.

Following lots of turmoil and visits to the hospital River was diagnosed with dystonia.

Dystonia is a term used to describe involuntary sustained muscle contractions that lead to abnormal movements and postures.

It is a neurological disorder that affects movement. The causes of dystonia are still not fully understood. Dystonia in children is likely to spread, affecting most of the body, this is known as generalised or early-onset dystonia.

River suffers from frequent muscle spasms and uncontrollable movements.

His parents were told that River is the only baby to have ever been diagnosed with the disorder and that they “have never seen anything like it.”

Looking at River, it would seem there is nothing wrong with him and at this stage because River is so young, doctors, don’t know how severe the problems will be.

The family are waiting for tests to determine the extent of the disorder.

It is likely that River will be unable to walk and talk.

The family are fundraising to help them in the long run for whatever the future holds. They are also raising money to be able to go to London to see a specialist doctor.

At just five and a half months old River has had seven lumber punctures – a process which sees the withdrawal of fluid from the spine, a series of scans and is on lots of medication, he takes nine drugs a day.

Jeni and Chris are now saving to see specialist Doctor, Jean Pierre Lin at the Evelina Children’s Hospital in London.

The cost of travelling to London and staying there for a week will be a financial burden on the couple who also have a three-year-old daughter, Roxi.

To help raise funds they have held a pub crawl, cake sales and have a ladies night coming up.

The family haven’t set a target amount they are just trying to raise as much money as possible.

Jeni said: “We are very worried for the future; we are fundraising so we can give him the best life possible. We are very scared.

“We have had lots of support, we felt so alone in the beginning, but everyone has been great.

“We would like to thank everyone so far for the donations for River and for all their help and support we really do appreciate it.”

Jeni added: “We can’t plan anything, some days I can’t even go out of the house with him.”

When asked if the family question “Why us?” Jeni said: “Every day.

“It makes me so angry and upset; I look at him and think he doesn’t deserve it. He has such a sunny personality, I would rather have it – I don’t want him to have it.

“I suppose, in a good way, he will never know any different. It would be hard if he knew what he was able to do and couldn’t do it any more.

“We have to take one day at a time.”

Although River’s sister, Roxi is just three, Jeni thinks she has an idea of what is happening: “She knows something is not quite right because we are at the hospital a lot, she is very protective over him, and she sees me crying a lot so I think she has a sense, an idea of what is happening.”

Jeni added: “What hurts the most is Roxi will say, ‘when River is bigger he can go on my scooter, or he can go on my trampoline, or we can dance together,’ because to be honest I don’t think he will do that – we hope he will and we will try things with him. I had my babies close so they could grow up together and I’m sure they will find their own way.”

When Jeni first thought their was something wrong with River she was told she was being an “over protective mother,” she had this message for all mothers, “If your instinct as a mother is telling you something isn’t quite right with your baby no matter how many professionals tell you otherwise, you need to push it.

“At first I was told nothing was wrong, and I think if River was my first I would have gone along with that. But I was right to push.”