The family of a north-east boy, who suffers from a rare condition which affects only one in every 4,000 people, have stepped up their bid to raise its profile.
Banff’s Alfie Henderson, nine, was born with 22q11.2 Deletion Syndrome – often called DiGeorge Syndrome – and helps campaign with his mum, Louise, for charities which support people with the condition.
Its symptoms can include congenital heart problems, frequent infections, developmental delays and learning problems.
It can also lead to other conditions such as kidney problems, hearing loss and disorders like rheumatoid arthritis or Graves disease.
Mrs Henderson has now joined up with her local MP to help other parents diagnose the condition early and bring attention to the work of the charity Max Appeal.
She has previously completed charity efforts for the charity, which supports families affected by DiGeorge, including the Great North Run.
She explained that the family found out about Alfie’s condition after he was rushed to hospital at just five days old. He had been suffering seizures.
And she added: “It was found these seizures were due to him having low calcium. He was diagnosed with 22q11.2 Deletion Syndrome at five weeks old.
“Alfie has quite a few problems relating to his condition, but he’s the happiest, most lovable little boy you will ever meet.”
David Duguid MP, who is spearheading an all-party group at parliament to bring attention to the disorder, added: “Through parliament, the group will seek to improve diagnosis and care for those affected by the condition by our health and social services.
“I have already met with local campaigners, including Louise Henderson from Banff. I know this is an issue that affects families in my constituency, but also people across the whole of the UK.
“Over the coming months and years, I hope we can make a difference to those families.”
The charity Max Appeal also campaigns for greater understanding of the syndrome and has organised a national awareness day to take place on November 22.
