Duo's London Marathon challenge for hospital that cared for niece
- Published
A married couple are taking on the London Marathon to raise money for a hospital that cared for their seven-year-old niece.
Sarah and Danny Singh, from Leicester, were inspired by Sophia Singh-Chauhan, who was diagnosed as a toddler with a rare, genetic condition.
Sophia needed "life-changing" surgery at the age of four at Evelina London Children's Hospital.
Now the pair are hoping to raise money to help other children like Sophia.
At 18 months old, Sophia was diagnosed with GNA01, a neurological development disorder that causes seizures and continuous involuntary movements.
At its most severe, the condition can cause movement "storms" - which can be life-threatening, according to the hospital, which is part of Guy's and St Thomas' NHS Foundation Trust.
Mr Singh, brother of Sophia's mother - Sima Singh-Chauhan - said when the "storms" first started, the family were "in despair".
"We were calling 111 and an ambulance, we didn't know what to do or enough about the condition," he said.
Sophia's mother was later warned that without surgery, her condition would worsen and in August 2021, she underwent deep brain simulation (DBS) surgery at the hospital.
The surgery lasted six hours and involved electrodes being implanted into Sophia's brain to target areas that control body movement coordination and posture, acting as a "pacemaker" for her brain.
Sophia, who is non-verbal, recovered from surgery and now no longer requires continuous sedation.
Mr Singh, 40, said: "Sophia is an amazing little girl - she has the most wonderful smile, is always happy to see people, and laughs at things that we find funny but she can't tell us.
"She has a heart of gold and lights up any room."
Unable to help medically, Mrs Singh said she and her husband wanted to do something for the hospital "that has given her so much".
They will take on the marathon on 21 April to raise awareness of Sophia's condition, while raising money for the hospital.
Barbara Kasumu, executive director of Evelina London Children's Charity, added: "We are all cheering on Danny and Sarah, and know they will make Sophia so proud."
Follow BBC East Midlands on Facebook, external, on X, external, or on Instagram, external. Send your story ideas to eastmidsnews@bbc.co.uk, external or via WhatsApp, external on 0808 100 2210.