Stevenage mum tells of four-year-old son’s inspirational fight to survive in bid to raise awareness
- Credit: Archant
A mum whose four-year-old son has a disorder which can cause up to 180 symptoms, including heart defects, is keen to tell his story in a bid to raise awareness of the condition, which is almost as common as Down’s syndrome, but not as widely known.
Logan Keir, of Shephall Way in Stevenage, was born with DiGeorge syndrome (22q11.2 deletion), which causes the deletion of a small piece of chromosome 22 and can cause symptoms including heart defects, cleft palate and learning difficulties.
Logan’s symptoms include a congentital heart defect, kidney disease, persistent vomiting, weak muscles and immune system, and developmental delay.
Last Christmas, the community got together and transformed Logan’s bedroom with new flooring, decoration and furniture, after his parents’ constant battle to keep his carpet clean from sick resulted in an appeal for help.
Logan has undergone open heart surgery and fought hard for his little life.
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His mum, Gemma Brown, said: “It’s this time of year when it all goes off - countless appointments ahead, new hospitals to attend, the dreaded heart scan. There’ll be a gastro referral soon for a hernia, uncoordinated muscles in his stomach and bowel, feeding issues and gastro-oesophageal reflux disease.
“Also, an eye test, hearing test and blood tests will be upcoming.”
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Logan, who has a younger brother Caleb, runs at the age of 12 to 18 months with the majority of his understanding.
Gemma said: “He won’t be able to speak to us about things he has done or what he remembers, so we’re not sure how far his memory goes back.
“He will repeat everything we say to him, but he can’t have a conversation yet, so if we ask what he wants to do, watch or play, he doesn’t understand how to respond and will go silent.”
In September, Logan started nursery at Giles Nursery and Infants’ School in Stevenage and Gemma is hopeful he will be able to stay in mainstream education with the right support.
She said: “Every year when something super special happens, it makes me feel so emotional. It’s just another blessing - a moment, a time we can cherish.
“There’s nothing worse than living in the fear of ‘what ifs’. We can’t do that as his parents, but it still gets me when I look in a year’s time and pray we will get another chance, another moment.”
For more information about DiGeorge syndrome (22q11.2 deletion), visit www.maxappeal.org.uk. Max Appeal is a charity which supports families affected by the disorder.