Heartbroken parents told baby girl with rare condition has only months to live

Eight-month-old Nellie Hammond has Krabbe disease – a degenerative condition which is so rare it is believed only eight children in the UK are currently affected.

Tragically, most babies diagnosed with the genetic condition rarely survive to see their second birthday.

But despite their heartbreak, parents Joe Hammond and Olivia Barker are trying to remain positive and have vowed to do all they can to give little Nellie a loved and comfortable life.

“She doesn’t wake up very much now and we haven’t seen her gorgeous smile or her little giggle since the day she went into hospital,” said Olivia and Joe, who are also parents to 18-month-old George.

“We will never forget the happy little princess we had before this condition took over.

“It’s hard to grieve for a child you still have, we already feel like we’ve lost a massive part of our little girl.

“However she is still our amazing, gorgeous baby, our little fighter and we will do anything we can to make sure she is loved, cared for and comfortable.”

Joe and Olivia, who live in Houghton, had taken Nellie to the doctors and A&E on a number of occasions since December 2019 with sickness, trouble eating and lack of head control.

But on April 3, Nellie had a seizure and was taken to University Hospital of North Durham before she was transferred to the Royal Victoria Infirmary for tests and doctors warned the worst case scenario was that she had Krabbe disease.

Nellie was kept in hospital and, due to the coronavirus lockdown restrictions, only one parent was able to stay by her side meaning Olivia had to endure three weeks without seeing her baby.

When the ‘beautiful’ little girl was allowed home, the 22-year-old mum said she was shocked at how much Nellie had deteriorated in such a short space of time.

And on May 6, her parents received the heartbreaking call to confirm Nellie had the life-limiting condition which leads to loss of eyesight, hearing, muscle movement and finally breathing.

Olivia said: “It was just devastating. With Nellie only having a few of the symptoms linked to Krabbe disease, we’d tried to convince ourselves it couldn’t be that. We knew something was wrong but we didn’t want to believe it was that.

“We are just trying to be positive and enjoying the little things and our time left with her.

“We don’t know if it’s going to be weeks, months, a year. We just don’t feel like it’s real, it’s still sinking in.”

Joe, 29, added: “We’re scared to go to sleep at night and to wake up in the morning because we don’t know what's going to happen.

“We just try and keep in mind that we are lucky to have her right now.”

Returning from hospital, Nellie is no longer the ‘smiling and laughing’ baby she once was and now needs be given 10 different types of medication to treat ease the symptoms caused by the condition – which is so rare her consultant last came across it a decade ago.

Nellie also has unsafe swallow meaning her parents have to suction her mouth which can need to be done as often as every five to 10 minutes on ‘bad days’.

Both Olivia and Joe are carriers of a faulty gene which causes the condition meaning for every child they have their is a one in four chance they will have Krabbe disease.

Their little boy, 18-month-old George, is also a carrier of the condition.

The family are now raising funds through a Just Giving page in the hope of buying some vital equipment and sensory toys for Nellie to enjoy with her brother George, who ‘adores’ his little sister. Funds raised would also go towards buying mobile base for her specialist chair and a hydrotherapy bath.

Olivia and Joe are also hoping to raise awareness of the condition, are calling for more regular screening for the genetic condition and are hoping to raise funds for Krabbe UK – a charity which has supported them during this time.

Olivia said: “It’s a horrible condition. It’s not just life-limiting, it’s terminal and at such a young age.

“I hope that by the time George is older there will be more that can be done.”

To donate to the family’s Just Giving page and read more about Nellie’s story click here.

To donate to Krabbe UK click here.

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