Community comes together for Harry's Walk, supporting South Shields boy with rare chromosome disorder
A community has come together to raise funds in honour of a South Tyneside boy with an extremely rare chromosome disorder.
His condition, which is most closely linked to a chromosome 8p disorder, means he 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.
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Since birth, Harry, who is now 21 months old, has spent a large part of life in hospitals around the North East, regularly being seen by doctors in South Tyneside District Hospital, Newcastle’s RVI and has also undergone 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, took part in Harry’s Walk, where fundraisers walked ‘8,000 steps for 8p’.
The group walked 3.5 miles from Souter Lighthouse to the Sundial Pub on Sunday, August 7, to raise money funding vital research for chromosome disorders in Harry’s name.
Harry’s Mam, Sonia Porter, said: “So many people turned up to support Harry and it was just amazing. It was such a good day. It was just brilliant and overwhelming that people turned up to support Harry.”
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.
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.