A tough little lad is fighting his way to recovery after undergoing a major bone marrow transplant.
Jack Shaw, who turned two on Saturday (April 4), had to have the operation as he was diagnosed with a rare life-limiting condition called MPS Type 1 Hurler syndrome, which affects around one in every 100,000 people in the UK.
He has done really well, though, as he’s such a tough little ladNadine Turner
His mum, Nadine Turner, of St Leonards, recently spoke to the Observer about her devastation after finding out her son only had years to live.
The Observer reported on the plight of little Jack last September and since then his mum has had to move to Surrey so as to be by Jack’s side as he continues to recover from his bone marrow transplant and chemotherapy. He is currently at the Royal Surrey County Hospital in Guildford.
Jack’s mum said this week that because of his chemotherapy and transplant his condition is no longer life-limiting.
MPS Type 1 Hurler syndrome is a genetic disorder in which the body lacks an enzyme called alpha-L-iduronidase. Without this enzyme, the body cannot properly break down long chains of sugar molecules called glycosaminoglycans. As a result, these molecules accumulate in the body, causing numerous health problems, which get progressively worse over time, such as heart disease and mental disability.
Jack was diagnosed with his condition last August by specialist at Guy’s Hospital in London, who knew instantly what the toddler had.
Nadine, 25, said: “Jack had his bone marrow transplant in December in order to stop his condition from getting worse. Three months afterwards he caught a viral infection and is currently in hospital.
“During his chemotherapy he became quite poorly and all of his hair fell out over Christmas. I shed a few tears when I held his hair in my hand and because of this I now want to give something back by donating 10 to 12 inches of my hair to The Little Princess Trust in order for the charity to make wigs for children who have lost their hair.”
Jack’s family have been raising awareness of his condition by holding charity events. His aunt, Kerri Shaw, ran the Hastings Half Marathon last month, raising more than £800 for The Society For Mucopolysaccharide Diseases.
Nadine said: “If Jack had not had the transplant he would have been brain dead and immobile by the age of six or seven. He still will be prone to bronchitis and pneumonia and will have to have surgery on his knees and back when he’s older, as he has a curved spine. He has done really well, though, as he’s such a tough little lad.”
To follow Jack’s story visit www.facebook.com/JackShawMPSHurlers.