Heartache as Nellie given just months to live
A family are spending their final precious months with their “perfect” baby girl who has been diagnosed with a extremely rare, life-limiting condition.
Eight-month-old Nellie Hammond has Krab be disease – a degenerative condition which is so rare it is believed only eight children in the UK are 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.
“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 anythingwe 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.
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, 22, said: “It was just devastating.
“With Nellie only having a few of the symptoms linked to Krab be 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 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.
Both Olivia and Joe are carrier sofa faulty gene which causes the condition meaning for every child they have there is a one in four chance they will have Krabbe disease.
Their little boy, 18-monthold 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.