Health
The couple mourns after being told that the boy has a few months to live and that his newborn daughter could follow the same fate.
A couple revealed that they were suffering after being told that the boy had a few months to live. And the daughter born may follow the same fate.
Emma Prestige, 29, and Scott Kearney, 33, received tragic news last month that 13-month-old Jace might not be able to live until the age of two.
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The baby was diagnosed with a very rare and incurable hereditary disease called Krabbe disease.
This condition, which affects only one 100,000 births, destroys the protective coating on nerve cells in the brain and nervous system.
With a second catastrophic blow, Emma and Scott are now facing a distressing wait to find out if their newborn daughter has the same gene.
The couple from Manchester are trying to raise awareness of their illness, hoping that Jace’s memory will survive after Jace’s death.
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Emma’s aunt Lindsey Sutton said: male: “The only thing they can do now is to make him comfortable. It’s the cruelest thing ever.
“He can’t move his limbs and can’t swallow. Many children are blind or deaf. The whole body shuts down.”
She said Jace was “a little sick” around the age of nine months, but doctors dismissed his condition as otitis media.
He underwent further tests and brain scans when he suddenly became unable to get up, albeit yes.
About three weeks ago, he stopped feeding and the couple received disastrous news that he had Krabbe.
According to the NHS, most symptoms occur around the age of 6 months and most patients die tragically by the age of two.
What is Krabbe disease?
Krabbe disease is a very rare hereditary disease that affects only 1 in 100,000 live births.
It destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system, causing severe degeneration of mental and motor capacity.
Symptoms do not begin to appear from 3 to 6 months of age.
They include:
- Sensitivity
- Fever
- Rigidity of limbs
- Seizures
- Difficult to eat
- vomiting
- Delayed mental and motor development
- Grabbed fist
The disease is usually fatal in infants under the age of two.
When the disease affects older children and adults, it increases lifespan and slows the progression of symptoms.
There is no cure and treatment is focused on palliative care. If detected early, there are some mild cases that have benefited from bone marrow transplantation.
Source: Crab UK
“Wythenshawe Hospital hasn’t seen cases for more than 20 years, so we didn’t know much about this,” Lynsey said.
“In the UK, there are only four children who are infected and still alive.
“It’s very unusual. There’s almost nothing on the website.”
The disease is rare, but both Emma and Scott are carriers.
A newborn daughter has a one-quarter chance of getting the disease, and there is a 50% chance that she will be a carrier.
Lindsey praised Emma as an “absolute soldier” during dire times.
She added: “We are all very close, so the whole family feels it.
“You feel hopeless in a way because there is nothing we can do.”
The family now wants to raise awareness of the disease and planned a sponsored walk at Sale Water Park this weekend.
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Ah GoFundMe A page has also been launched to help Emma and Scott make memories with Jace.
Lindsey said, “For Emma and Scott, it’s just to let them know.
“Jace is the smiling boy. Through everything he has done so far, everything he has spent smiling can still brighten the room.”
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