Hi, my name is Chris Newton-Sealey and I have entered several events this year to help raise funds and awareness. Please follow my son's Facebook page for more info on what events I've entered (Jace's Journey with NKH) and please sponsor me and help reach my goal!

Jace is 9 months old, and was diagnosed with an incurable genetic metabolic condition- Non Ketotic Hyperglycinemia (NKH) a week after birth. Its been a rough ride of seizures, hospital visits, developmental delays and end of life care.

We were told originally Jace was unlikely to survive, but Jace is proving doctors wrong and is fighting so we want to give him the best chance.

Recently, we've come across a treatment which have proven to have outstanding results in other children with NKH. We hope that with it, Jace will have a chance at hitting some of those developmental milestones we've missed (like head holding, sitting, and if we're really getting our hopes up, walking and talking).

The treatment is called Quantum Reflex Integration with Low Level Laser Therapy. It's done at home, and requires the purchase of a laser (which costs up to £2500). This treatment will hopefully help with some of those developmental issues.

This treatment is not available on the NHS.

We know we're asking a lot, but we can't afford this treatment out of pocket. It's hard to see other children having success with these treatment able to do the same for Jace.