When Nellie Hammond was born she was a "smiley, happy little baby girl".
But after suffering a seizure, Nellie was taken to hospital for tests and her parents were given the heartbreaking news their little girl only has months to live.
Nellie, who is just eight months old, has been diagnosed with Krabbe Disease - a rare condition that causes the progressive damage of the nervous system.
Tragically, her parents, Joe Hammond and Olivia Barker, of Houghton, have been told that babies diagnosed with the genetic condition rarely survive to see their second birthday.
The disease is so rare that only eight children in the UK are believed to have been diagnosed with it.
Olivia, 22, said: “We are devastated. It is so hard. She went into hospital after having a seizure and was a smiley, happy little baby but when she came home all that was gone.
“She doesn’t wake up very much, she doesn’t laugh and hasn’t smiled since.
“She is now fed through a tube and has to be suctioned as she can’t clear her secretions and has an unsafe swallow. We’re drawing up so many medicines daily and we have slowly adjusted to our new routine.
“We will never forget the happy little princess we had before this condition took over.”
Joe, 29, said: “Most children don’t survive to the age of two. Her health will decline and she will lose her eyesight and hearing, then her oxygen levels will deteriorate.
“It is devastating. It is hard to grieve for a child you still have, we already feel like we have lost a massive part of our little girl.”
The couple, who also have a 18 month old son George, first thought something was wrong when Nellie was around three months old and she had lack of head control, was being sick and had trouble eating.
They made numerous visits to the accident and emergency department and were reassured their little girl was okay.
In April, Nellie suffered a seizure and was taken to the University Hospital of North Durham before being transferred to the Royal Victoria Infirmary for further tests.
Joe, who stayed with Nellie at the hospital as only one parent was allowed during the coronavirus lockdown, said: “They did an MRI and EEG and other tests. The consultant came round and said there were a couple of things it could be, including Krabbe Disease.
“Nellie was able to come home as she’d stabalised and we waited a couple of weeks.
"We received a phone call saying the genetic test had come back and that it was Krabbe Disease.”
Olivia and Joe and both carriers of a fault gene which means there is a one in four chance of any child they have being diagnosed with Krabbe Disease.
Olivia said: “It is a hard decision. We were lucky to get George and Nellie 10 months apart. George is absolutely fine and you look at Nellie who really is not.
“Would you put yourself through that again?”
Now the couple are focused on staying positive and given their daughter the best life possible.
A fundraising campaign has been launched to purchase specialist and sensory equipment for Nellie as well as raising awareness of the condition.
Joe added: “Krabbe disease is not routinely screened for here in the UK, in the USA there are only a few states that actively screen.
“This needs to change, and the more we speak about it, the more aware people are then hopefully this will happen in the future because no parent should have to go through something like this, but until then if they do, we’re here and Krabbe UK is here, and the other amazing parents who have helped us are here to.”
To donate to the fundraising campaign visit here
