“Heaven on earth”: New treatment offers hope to children living with rare bleeding disorder
A new treatment is offering hope to children living with a life-threatening blood disorder.
Dermaine Thompson, aged nine, was diagnosed with Haemophilia A, a rare condition that affects the way the blood clots, causing sufferers to bleed and bruise more easily than others.
He was part of an international clinical trial, XTEND-ed, which is helping children experience fewer bleeds and significantly reducing hospital visits.
The treatment is now available on the NHS. When his Mum, Tanya, from Birmingham, heard about the trial she described a feeling like “heaven had come to earth”.
She signed up Dermaine, who had been under the care of Birmingham Children’s Hospital’s Haemophilia Unit, for the trial at the hospital’s Clinical Research Facility.
Tanya shared: “Before this trial, we had to attend hospital every other day for treatment. This was so difficult to manage alongside caring for his siblings and working as a nurse.
“Following the trial, Dermaine now only needs treatment once a week and I have now been trained to administer it myself at home. This has completely changed our lives.
“He has his childhood back. I’ve not seen a single bruise on his body since having the treatment. As a family, we can cope with his condition so much better and Dermaine is now living the happy life that any nine-year-old should.”
The trial involved a new clotting medication designed to prevent and control bleeding episodes, allowing children to take part in everyday activities such as playing outside with friends.
The treatment is now available on the NHS, offering new hope to families affected by Haemophilia A across the UK.
Dr Jayashree Motwani, Paediatric Consultant Haematologist, led the international study at Birmingham Children’s Hospital.
Dr Motwani shared: “This treatment can significantly improve the quality of life of someone living with Haemophilia A. Not only does it reduce the burden of regularly attending hospital, but it can also help children live a healthier, happier life with fewer bleeds.
“We are so happy that Dermaine is now able to enjoy life with his siblings and family.”
Tanya added: “The team at the Children’s Hospital have now become our second family. Dermaine loves coming in to see them and we are so grateful to everything they have done for us. This treatment has given us our lives back.”