Almondsbury boy battles with one in a million condition
Noah Jackson is a one-year-old with a condition so rare it affects just one in every million people worldwide.
Noah has primary hyperoxaluria type one, which means his liver is missing one enzyme and so produces crystals called calcium oxalate. Left untreated, the condition would slowly calcify his organs.
He visits Bristol Royal Hospital for Children six days a week with his parents Beccy and Garth and his half-siblings Coel, eight, and Lorelei, six.
There he has haemodialysis for three hours before returning home to Almondsbury.
Mum Beccy Sweet said: “It’s hard coming into hospital six days a week. It’s not what you think will happen when you have a baby, but the care and treatment we have received is second to none.”
“The staff on the Lighthouse Ward have become our family and our little boy would not be here without them.”
Noah’s condition is so rare that it took doctors three weeks to diagnose him, after sending blood samples across the country. He is only the second patient in Bristol hospitals to have the condition.
Beccy said: “Garth and I are both carriers of the gene but it’s dormant in us. Noah had a one in four chance of getting the condition with the ‘bad’ gene from both of us, and it would be same if we had any more children.
“Noah was diagnosed with the condition when he was 11 weeks old. They did some blood tests and when they came back it was really bad news. It was awful. I knew something was wrong, but I didn’t think he would be dying.”
Noah had a liver transplant in June this year at Birmingham Children’s Hospital. Once he is bigger and stronger he will have a kidney transplant.
Now the family have lent their support to Above & Beyond, the official charity for Bristol city centre hospitals.
They are rallying people to sign up to the charity’s Bristol to Paris Cycle Challenge – a 470km bike ride from Bristol to the French capital over four days next September.
For more information on the Bristol to Paris Cycle Challenge, visit the Above and Beyond website at: www.aboveandbeyond.org.uk