Her loving family were told their little girl would not live beyond one when she was born.

But the young fighter defied doctors and has helped make some very special memories for her family in her four years.

Heartbreakingly Sophie Kenny at the age of four is being supported by Derian House Children's Hospice where she is on end-of-life care.

Sophie, whose family are from Bolton, has a rare condition which causes difficulties breathing, feeding, and walking.

The neurological condition worsens over time and Sophie cannot walk or eat, suffers from seizures and tragically is not expected to live for long.

She is now at the family home after spending time at Derian House in Chorley and will go back when her condition worsens.

Heart-broken aunty, Leah Hadgraft spoke about the time when doctors told the family Sophie would not live to see her first birthday.

The Bolton News: Sophie Kenny

Leah said: “When she was born, we were told it was unlikely she would come out of hospital. She’s still fighting to this day.

“She is only four and the family, and her brothers, have memories with her, so it’s heartbreaking for us.

“It was upsetting, and we were really stressed.”

Sophie’s eyesight has also been affected though she is not classed as blind.

Her mum, Danielle Allen, had to quit her job at a nursery to care for her daughter full time.

Leah said: “Sophie has carers that come and help to relieve some pressure off Danielle.

"Sophie has to have a lot of medicines administered on a strict schedule so it can be difficult for the family to make any plans, or just to leave the house.”

Leah will be doing a skydive for Derian House in August, which she is raising money for.

Derian House provides hospice care for babies and children, along with the chance for families to make memories with the children in a fun-filled environment. They provided Sophie’s parents and brothers an apartment above Derian House so they wouldn’t have to leave Sophie alone. 

Leah said: “I am nervous but all I think about is the kids at Derian House and the things they go through, which makes the sky dive feel like nothing. The money from the skydive goes directly to Derian and funds many of the services they provide to the children.”

Non-ketogenic Hypoglycaemia (NKH) is a genetic disorder that is extremely rare and under-researched. Children with NKH struggle to break down the amino acid glycine which results in low muscle tone, seizures and severe development issues.

Sophie’s condition is controlled using a strict schedule of medications which have to be monitored and adjusted regularly. Sophie has spent her life in and out of hospital and continues to fight each day, helped by lots of love and cuddles from her two brothers and her mum and dad.

Donate to the Just Giving page here. (https://www.justgiving.com/page/leah-hadgraft-1705487622634)