Northampton mum inspired by sick son's strength set to run London marathon for children's hospice

A Northampton mum of a severely ill teen has smashed her fundraising target ahead of running the London Marathon this week.

Libby Harvey, 41, from Thorplands, is running the London Marathon on Sunday, October 3 after she was inspired by her 13-year-old son Alexanda, who suffers from a range of complex medical conditions. Libby has exceeded her fundraising goal of £1,500 and has raised an impressive £1,516 so far on her JustGiving page.Libby said: "I can't thank people enough for their support and generosity along my training journey.

"I set an ambitious fundraising target for a children's Hospice in Oxfordshire, where my son goes, and it feels so good to have smashed it. Now I've got Sunday's marathon to contend with. Wish me luck!"

The Northampton mum had only ever run a couple of miles before this year when, inspired by her son's determination and optimism, applied for a ballet place to run the London Marathon. To her surprise, she successfully secured one of the 17,000 ballot places out of nearly half a million applications.

Alexanda lives with a number of complex medical conditions including Interstitial Lung Disease, Phenylketonuria (PKU), Surfactant Protein Deficiency C, and Epilepsy. His illnesses mean that he needs to spend a lot of time being treated on the Paddington Ward at Northampton General Hospital so he even sends a robot to school in his place, which acts as his eyes, ears and voice in the classroom when he cannot be there in person.To give Libby some respite, she and Alexander both benefit from short stays at the Helen and Douglas House - a children's hospice in Oxfordshire that helps families with children, who have a life-limiting prognosis and children needing palliative care.

Libby wants to take the opportunity to raise awareness of the needs of young people with life limiting medical conditions and those needing palliative care. She strongly believes that Northamptonshire needs a children's hospice.

She said: "Going to a residential Hospice has made a huge difference to our family – there is someone to talk to 24 hours a day when I am worried about anything.

"When we are there, I get to just be ‘Mummy’ and ‘Libby’ rather than constantly being on high alert as, normally, I am responsible 24/7 for all Alexanda's large array of medication and physio, etcetera.

"Just having a two-day proper break from the medical responsibilities is a huge weight off my shoulders and they are superb with Alexanda.”

When at the hospice, Alexander loves to use the spa on the more difficult days when he needs to rest and he loves to play with all the musical instruments. On one of his previous stays, he put together several Star Wars lightsabres and said he was training to be a Jedi.

Alexanda said: “I love going to Helen and Douglas House as they help me feel like I haven’t got all these tubes so I can just be happy and enjoy time with Mummy."

To find out more about the Helen & Douglas House, visit https://www.helenanddouglas.org.uk/ and, to donate money to Libby's fundraiser, visit her JustGiving page.

Are you a parent whose child lives with life limiting conditions like Alexanda's or receives palliative care? Do you believe that Northamptonshire is in dire need of a children's hospice? Email [email protected] with your thoughts and stories.