Litherland family campaign to find a cure to save their baby boy
A family from Litherland have told Radio City how their hoping help from across the globe can help save the life of their baby boy who has a rare, life-limiting condition
A family from Litherland have told Radio City how their hoping help from across the globe can help save the life of their baby boy who has a rare, life-limiting condition
Little six month old Jacob Rimmer was diagnosed with a condition called NKH when he was born - It means he suffers from regular seizures and has problems with learning and development.
It can profoundly affect a child’s ability to learn and to do normal things such as eating, sitting, and walking.
It currently affects one in 60 thousand infants and as it stands there is little or no treatment.
Now parents Kevin Rimmer & Gemma Dalton want to start raising awareness of the illness that has changed their entire lives.
Kevin said: "We don't give ourselves time to think about it, if you id you would be a mess. The worst thing is that I couldn't do anything about it, I was praying every day I had it. I don't think any parent would have to think about losing their own kid, it's wrong"
"It's important to get people to know, and anything they can do to help, it would be great, you couldn't describe it."
Gemma said: "It's the worst thing not knowing how long we've got with him, that the scary thing - we're trying not to think about it."
"We just block everything out, it hit us the other day when we said we were trying to find a cure and we realised we're trying to save him"
The family are being supported by Joseph's Goal, a charity in the North West who is fundraising research into the condition.
Dr Johan Van Hove, of the University of Colorado has dedicated his life to finding a cure for NKH.
All funds raise go towards research like his.
The family are holding a charity day on Sunday the 10th April at the British Legion Club on Fleetwoods Lane in Netherton
For more information on their fundraising head over to this link