A north-east mum has told of the invaluable support a children’s charity has given to her family.
Louise Glennie’s 10-year-old son Harvey was diagnosed with a rare genetic disorder called duplication 15q syndrome after undergoing genetic testing in Aberdeen when he was 18 months old.
His condition causes a range of neurological and respiratory problems, and he also has severe epilepsy as a result.
The family, who live in Inverurie, are supported by Charlie House, which assists children with complex disabilities and life-limiting conditions and their families.
The 42-year-old, who also has a daughter, Eilidh, aged 7, said: “When I was 34 weeks I had reduced fetal movement and felt generally unwell, I went into hospital where it was found that Harvey was in distress and I needed an emergency C-section.
“We didn’t know there was anything wrong during pregnancy. When he was born he was in the neo-natal unit for three weeks.
“We took home a baby thinking he was little, but he was okay. When he was about four to five months old I noticed a few things weren’t right, such as his eyes seemed to be rolling at times, and he was a bit floppier than other babies. He was low-toned and wasn’t meeting his milestones.
“As Harvey’s condition is rare, we were sent home from the genetic clinic with an online source to research what his future may hold.”
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After starting on medications for his severe epilepsy, Harvey stopped eating and is now fed through a tube which is inserted into his stomach, and lost a lot of movement. He also has nocturnal hypoventilation, which affects his breathing while sleeping.
But he’s now doing well, and attends St Andrew’s School in Inverurie. Louise said: “It really is an amazing school.
“Now that he’s peg fed and on the ketogenic diet, his nutrition is much better. He’s so caring and cuddly. He’s very affectionate – a very gentle soul.
“He’s just like everyone else, he has good days and bad days. Harvey’s not a demanding boy but his needs are challenging. We manage what he’s going through by giving him lots of cuddles and reassurance.”
Louise spoke about the challenges of raising a child with Harvey’s condition.
She said: “When he was born, there wasn’t Charlie House or anything like that. You get given this diagnosis and you’re not sure what it means or what the future holds.
“I had a fantastic neo-natal class but it could be difficult because all the children were meeting their milestones and mine wasn’t. You’re just in a different situation to other people.”
Louise said Charlie House has been a lifeline.
She said: “I think it’s amazing now. There’s the Charlie House nurse, Fiona, and she supports us as well so you’re not going to feel isolated and alone when you take home your child now. There’s always going to be someone there to chat to you.
“They can either come to your home or you can start attending groups, which become a support network.
“The activities that Charlie House puts on are fantastic. It’s difficult in the summer holidays, but they set everything up and you meet up with all the other families.
“They’re Harvey’s chums. I also think it’s very good that Eilidh is very much part of it. It has such a huge impact on her. She might not be aware of it, but I am.”
How you can support the Charlie House Big Build project
Charlie House is hoping to raise £8 million for its Big Build Appeal to construct and maintain a specialist support centre in Aberdeen.
A whopping £2.4m of the funds has already been secured through generous supporters to fund the facility that will help youngsters with complex disabilities or life-limiting conditions. Visit bit.ly/2ROBktF or call 01224 313333 for more information.