A Dunscore baby has been diagnosed with a condition so rare that it affects just six other people in the world.
Little Seth McFadzean’s parents Carrie and Peter were told by doctors they would be more likely to win the lottery four times in their life than inherit Tetrasomy 18p Mosaicism.
Carrie, 38, said: “I felt like I’d been shot when we were told. We ended up in a very dark place.”
Despite a problem-free pregnancy, mother’s instinct told Carrie something wasn’t right with Seth shortly after he was born.
“He didn’t seem well, was a poor feeder and lost a lot of weight quite quickly”, she said.
“We took him to hospital and he had test after test, but everything came back clear.
“He ended up staying in the neonatal unit at Dumfries Infirmary for seven weeks. He was a wee mystery to all the doctors.
“When we were told he had this extremely rare chromosome condition that affects just six other people in the world, I felt like I’d been shot.”
Tetrasomy 18p Mosaicism means Seth faces developmental delays, learning difficulties, seizures and eye, heart and kidney problems.
But nobody can really predict what the future holds for the tot who was born on April 29.
Also parents to three-year-old Archie, Carrie and Peter, 40, will need to take each day as it comes.
Self-employed Carrie added: “We didn’t know what to do or where to turn at the start, but we’ve got our heads round it a bit more now and we’ve actually learned more about the condition from other families in similar situations to us, than from the doctors.
“We went through a very dark time and it’s been horrendous, but we’re getting on with things. There’s no other option when you’ve got two beautiful little boys to look after.”
Carrie and Peter want to help other families who find themselves facing a similar devastating diagnosis.
On November 9, along with Carrie’s sister and two nephews and Peter’s dad, they’ll take part in the first ever Dumfries Pop-up Kiltwalk to raise money for SOFT UK.
The charity provides support and information to families affected by conditions similar to Seth’s.
The McFadzeans can be sponsored via Carrie’s Facebook page or you can pop into her salon, Extend, in Bank Street, Dumfries.
