AN inspirational mother of a ten-year-old boy born with a rare and incurable brain disease said the family were "absolutely devastated" and went through a "rollercoaster of emotions" when doctors broke the news.
Olly Hooper, from Andover, was just two when his parents, Claire and Adam Hooper were told he has hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC), a severe form of TUBB4A leukodystrophy.
The disease, which mainly affects babies and children, is rare but currently incurable.
Olly, now aged ten, currently uses a wheelchair and needs 24-hour supervision; he is unable to talk and must be fed blended food through a tube into his stomach.
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The 40-year-old mother, who lives in Picket Twenty with husband Adam and Olly's brothers Charlie, 13 and Eddie 6, said: "When we found out it was a real mix of emotions as we just didn't know what it was because it is extremely rare and nobody could tell us much.
"Olly struggles to do normal things and it's incredibly painful for him to use his mouth. Finding out Olly suffered from a life–threatening illness came as a total surprise, and of course it was devastating news.”
She is now advising other families who have children affected by the disease to reach out for as much advice and help as possible.
She continued: “Despite everything, Olly is very happy. We pray that one day there will be a cure, but for now we just carry on as best we can.”
Claire had a normal labour and birth, but when Olly was six months old she was concerned about his inability to sit up or control his head movements; three months later the family were advised to take Olly to the doctor.
In November 2014 Olly was referred to the neurology and genetics unit at Southampton General Hospital. Five months later, in April 2015, all his tests came back as normal.
At this point the disease was starting to be better recognised in the medical community, and it was decided Olly’s blood should be sent for gene sequencing to the Amsterdam Leukodystrophy Centre in the Netherlands.
More than one year later, when Olly was almost three years old, it was confirmed that he had the disease.
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Currently, there is no cure. for the disease but Claire told the Advertiser it has taught the family to treasure every day.
She hopes more information about the disease will now be available to families faced with the same thing.
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