A FATHER is completing a charity run in memory of his daughter who died aged just 13. 

Neil Skinner, 48, has signed up to take part in Chestnut Tree House’s 10K run in Littlehampton to raise money for the hospice, which cared for his daughter Sacha. 

When Sacha was three she began to have unexplained seizures and spent years having tests before being diagnosed with Batten disease.

The rare genetic disorder, which affects the brain and nervous system, meant that Sacha was not expected to live beyond the age of 10.  

The Argus:

Batten disease causes the nervous system to steadily decline, causing a wide variety of neurologic problems, including loss of vision and seizures.

Neil said: “Sacha was on so many medications to help manage her symptoms. She was such a brave little girl.

“We would visit Chestnut Tree House for short breaks, and Sacha loved it there. 

“They were so good with her. She was a very sensory girl, so they spent a lot of time in the sensory room with her and doing sensory activities.

“It wasn’t only Sacha that benefitted from Chestnut Tree House. 

“I benefited greatly from their counselling team, who was always there to help. 

“We also met other families in similar situations which made us feel less alone. 

“Chestnut Tree House has the whole package, we had complete trust in them and knew we were all in safe hands.”

The Argus:

On September 27, 2013, at 13 years old, Sacha died at Chestnut Tree House in her father’s arms. 

Neil, from Islington, said: “Sacha had a beautiful and calm ending. I remember the day after she passed, I walked into the gardens at the hospice and was welcomed by a wealth of butterflies, birds, and all sorts of wildlife all around us, a sign which gave me peace of mind knowing that she was okay. 

“I will forever feel grateful for the hospice, as I know Sacha’s ending could have been very different in a more clinical setting, such as a hospital. 

“She was around people that knew and loved her.”

For some participants, like Neil, the Littlehampton 10K will be an emotional, as well as a physical challenge.

Taking place on Sunday, September 4 on Littlehampton beach promenade, the route passes through residential Littlehampton, Rustington and Mewsbrook Park. 

Speaking about why he has signed up to the Littlehampton 10K, Neil said: “Chestnut Tree House have had such a big impact on my life, and they still do, and although I actually hate running, I just felt compelled to want to do something to give something back to them.”

The Argus:

After the death of his daughter, Neil channelled his grief into artwork, communicating a message of hope and positivity. To find out more, please visit www.angel-london.com 

To find out more about the 10K, please visit www.chestnut.org.uk/10k and to sponsor Neil, please visit www.justgiving.com/fundraising/RunforSacha