Arthur was born on the 12th of March 2017 in Gloucestershire, UK. His parents, Charlene and Ashley were over the moon to introduce Arthur to his big sister Ellie.
Two days after birth, now at home, Charlene and Ashley noticed Arthur didn’t open his eyes. He’d never cried, was extremely floppy and didn’t move his limbs. After voicing their concerns, Arthur was admitted to hospital and ventilated due to rising CO2 levels.
After 10 agonising days, many tests (including a lumbar puncture and an MRI scan) Arthur was diagnosed with Nonketotic Hyperglycinemia (NKH). This was unheard of, and a complete shock to his parents.
With the support of the doctors at Gloucester Royal Hospital, his parents made the decision to remove Arthur’s oxygen tube and let the little man fight, and he did!
Arthur continued to beat the odds, celebrating his 2nd birthday in March 2019 and going on a family holiday to Disneyland Paris. Sadly, two weeks after returning from this holiday Arthur began to deteriorate. He was transferred to Acorns Children’s Hospice where, on the 2nd of May (NKH Awareness Day), Arthur passed away in his Daddy’s arms.
At the moment there are some medications used to treat NKH, but they are very harsh on tiny bodies and don’t work in all cases. Arthurs family and close friends are now working hard to help fund research into NKH and hope this will enable a cure to found for this genetic condition.