This year, on 13th September, I’ll be running the Great North Run to raise money for Martin House Children’s Hospice — a place that has become incredibly important to our family.

Our daughter Maeve has a rare life‑limiting genetic condition called Cockayne Syndrome, caused by DNA repair defects. It affects her in many ways: growth failure, hearing and vision loss, premature ageing, photosensitivity, developmental delay and ongoing neurological decline. There is no cure — only treatments and support to help her flourish, stay comfortable, and enjoy life for as long as possible.

Maeve needs constant care in every part of her day. Alongside regular hospital appointments and home visits, her daily routine includes physiotherapy through play, oral and PEG tube feeding, medication, and full physical support to sit, move, play, bathe and rest. This level of care is physically and emotionally demanding for all of us.

Our eldest daughter, Elsie, is not only a brilliant big sister but also a young carer.

Despite everything she faces, Maeve is a loving, friendly, happy girl who adores people and gives the best cuddles. But one of the hardest parts of caring for a child with such complex needs is the emotional weight of stepping away — the guilt, the worry, and the fear of placing that responsibility on others.

This is where Martin House has changed our lives.

They give us the chance to pause. To breathe. To rest as a family or individually, knowing Maeve is receiving the highest level of care, understanding and love from people who truly get her needs. That peace of mind is priceless. It allows us to return home recharged, supported, and able to keep giving Maeve everything she needs.

Running the Great North Run is my way of saying thank you — and of helping Martin House continue offering this warmth, kindness and expert care to families like ours who are navigating the most challenging circumstances.

Any support or donation, no matter the size, will mean so much to us — and to the countless families who rely on Martin House during the hardest moments of their lives.

Thank you for reading our story and for supporting a cause that has given us strength when we’ve needed it most.

From the charity.

Martin House provides family-led hospice care, free of charge, for children and young people with life-limiting illnesses across West, North and East Yorkshire.

Thanks to your generosity, Martin House can be here when families need us the most.