A DEVOTED mum says she wants to spend as much time as she can with her son who has been diagnosed with a life-limiting condition.

Mother-of-two Chelsea Donachiee, from Maesglas in Newport, says her hopes are pinned on a revolutionary treatment which costs in the region of £4,000.  Her five-month-old son Zanye has been diagnosed with Spinal Muscular Atrophy (SMA) type one, a condition that affects nerve cells which run from the spinal cord out to the muscles and causes progressive loss of movement and muscle weakness.

The only treatment is a drug called Spinraza which is available through a programme that is open to children with the condition, with the agreement of a medical team and the parents. Zanye is currently at the Noah's Ark Hospital in Cardiff.

Miss Donachiee said: “I’m not coping very well. I also have a two-year-old, so I am trying to cope for him. He is confused by what’s happening to his brother. He doesn’t know where he is, or where he’s staying. When he’s not here he’s waking up asking for his mum all the time."

The family are stuck in limbo as Zanye’s medical team weight up the options for him and put his treatment options in place.  The 23-year-old added: “We are waiting for a doctor to tell us what the benefit of the treatment would be and what the outcome might be. Then it’s up to us if we want him to have it.

“They don’t know if it will help him live longer, they can only see the outcome in six months.

“At the moment we have just been in hospital. He was in a high dependency unit at first. I can hold him now, but it depends on his breathing machines.We have been able to put him on the floor. He can’t play but he does like to watch the lights.  “We are trying to get him home now, so we can live the time we have left with him.”

In some cases, babies with the condition that take the drug survive longer than expected, and have a better quality of life because they are able to do thing like sit independently, stand, or walk when they would otherwise be unable to.

Her close friend Alanah Davies, who is also from Newport, set up a fundraising page to help Miss Donachiee with the potential costs of future treatment and to help the family enjoy life together.

She said: “I felt heartbroken and wanted to do something. I have offered to look after her other son Iziah, but I wanted to do some fundraising for her.

“I thought there has to be something we can do to help her out and so that she knows she is not alone.

“She will need to buy a new pram that can store his oxygen bottles and she doesn’t drive, so it’s hard travelling to hospital without transport. I can’t take the pain or the illness away, if I could I would, you are helpless when a baby is diagnosed with such a serious illness.”

Miss Davies has set the target of raising £4,000 and has already been overwhelmed by support people have shown them.

She added: “We want to raise £4,000 but I would be ecstatic if I can raise more.  “I want to help them make some memories and just to lift their spirit. I want them to have a nice Christmas and make his life, what he has left of it, a little bit easier.”

A JustGiving page for Miss Donachiee can be found at justgiving.com/crowdfunding/alana-davies-2