A five-month-old baby has made a ‘miraculous’ recovery from a rare disease that top consultants had never seen in a child so young.
Harry Thomas, from De Aston Park in Market Rasen, was rushed to Nottingham Queen’s Medical Centre where doctors battled to save his life over a tense four hours.
The little fighter pulled through and was diagnosed with serious kidney disease aHUS, which affects fewer than 200 people in the UK.
Harry had been facing daily visits to hospital for treatment to keep him alive - but the NHS in Lincolnshire approved funding for £3,500 ‘miracle’ drug Soliris to transform his life.
And Harry’s mum Claire, 28, is overjoyed.
She said: “He’s reacted so brilliantly to the drug. He continued to get better and basically miraculously recovered from it.
“With the drugs you can lead a normal life. It feels like a miracle cure.
“He’s back to his normal self - happy, smiling and he wants to play.
“It’s changed our lives dramatically.”
Harry had been very ill, he even stopped urinating, and will have to take the ‘miracle’ drug every two to three weeks for the rest of his life.
Mum Claire said: “It’s all we could think about. You can’t focus on anything other than that. It was a complete rollercoaster.
“It was the worst thing that could have happened to us and we’d never want to experience that again.”
But Claire said there are people in other parts of the country who have not had funding approved for the miracle drug - and is encouraging Rasen Mail readers to sign a petition to change that.
She said: “It’s life changing and you can’t put a price on a child’s life.”
Claire is organising events to raise awareness
and funding for charity aHus.
‘Harry Helping aHUS’ will have a stall at Market Rasen Business Improvement Group’s Grand National themed market in Market Rasen Market Place on Saturday, April 6.
And there will be a charity dinner dance at Market Rasen Racecourse on July 13 at 7pm.
There will be a live band, raffle and three-course meal. Tickets cost £37.50. Call Nicola Thompson on 07921 151419.
All money raised at this event will go to aHUS UK and the paediatric intensive care unit
and renal ward at Nottingham Queen’s Medical Centre.
For more information search ‘Harry Helping AHUS Awareness’ on Facebook.
To sign the petition go to epetitions.direct.gov.uk/petitions/46252