Meet the South Tyneside boy with a genetic disorder so rare it doesn’t even have a name yet
A South Tyneside family whose son is thought to be one of the only people in the world with an extremely rare chromosome disorder are trying to raise awareness of the condition and funding for vital research.
Harry Trotter, 21 months old, was born with the disorder so rare, it doesn’t even have an official name, most closely being linked to a chromosome 8p disorder.
The condition means Harry is missing certain genetic material, affecting his entire body and causing him to have low muscle tone, bowel issues and being unable to walk or talk, as well being behind in development.
Doctors initially became concerned with Harry during pregnancy, when scans showed he wasn’t developing as he should be, to the concern of mum Sonia Porter 42, and dad Anthony Trotter, 55, from South Shields.
After being born in Sunderland Royal Hospital, Harry showed significant development issues and couldn’t open his eyes for the first two weeks of his life, leading to spending his first few weeks in hospital being tested by doctors.
At just a few weeks old, after undergoing a number of different tests, Harry was eventually diagnosed with a chromosome disorder.
Since then, Harry has spent a large part of life in a hospitals around the North East, regularly being seen by doctors in South Tyneside District Hospital, Newcastle’s RVI and has also undergone to tests from scientists at The Life Centre, in Newcastle, in order to find out more about his disorder.
To helps raise awareness and support vital chromosome research, Harry’s family, friends and members of the Waves Disability Support group which he is a part of, will be taking part in Harry’s Walk - a walk from Souter Lighthouse to the Sundial Pub where fundraisers hope to walk 8000 steps for 8p.
Money raised from the walk will go towards The Rare Chromosome Disorder Charity, in order to fund research into genetic chromosome disorders.
Harry’s mam, Sonia, said: “We’re all so proud of Harry for battling through this with a smile and still being such a happy child. He’s come on leaps and bounds over the last years and months and he’s starting to do a lot more. I couldn’t be any prouder.
“We wanted to do something to support a charity and research and it’s so overwhelming to see so many people want to take part in the walk and support Harry. I thought it would just be me and a few family members but so many people want to take part and it’s just nice to know they want to do it for Harry.”
Harry lives at home with his Mam and Dad Sonia and Anthony, who are both full time carers, in Whiteleas, along with his 16-year-old sister Katie Trotter.
The condition mirrors that of chromosome 8p disorder, which means genetic material located on the short arm of chromosome 8 in each cell is missing. Harry’s condition is similar to this, but also includes genetic aspects doctors claim to have never seen before.
The walk will take place on Sunday, August 7, with the aim of walking 8000 steps for chromosome 8p.
To find out more about the walk and Harry’s story, visit the Harry’s Walk Facebook group set up by his family at https://www.facebook.com/events/s/harrys-walk/593816588796963/