RAFBF provides support to Reservist Sgt Neil Sinclair and 7 year old daughter Grace

Tuesday 25th June 2024

Following his daughter’s rare medical diagnosis as a baby, RAF reservist Sergeant Neil Sinclair reached out to the Fund for support, which resulted in £30,000 worth of specialist mobility equipment that ultimately changed the family’s lives.

On 13 July 2017, life for Sergeant Neil Sinclair and his family changed forever. It was the date his 10 and a half month daughter, Grace, was diagnosed with muscle deteriorating condition SMA 1.

Neil comments:

“That day will be ingrained into my memory forever, the doctors gave Grace a 20% chance of living to the age of one, and a 5% chance of reaching two.”

However, six years later, Grace has defied the odds and enjoys life like an average seven year old – she loves Frozen, watching YouTube and going to school.

Neil, who is now a reservist at 605 Sqn based at RAF Cosford, said:

“Grace is doing well now, but life has been challenging. In 2018, Grace spent over 120 days in hospital. She has been in intensive care countless times, including from a common cold and COVID-19.

“Grace got her first chest infection in October 2017 – she couldn’t swallow, she was floppy and needed respiratory help. She spent the next 18 months in and out of hospital.”

In 2017 a new drug became available, which Grace has been on a trial of.

Neil explains:

“The drug has helped Grace build her muscles up, when diagnosed, she couldn’t sit unsupported or hold her head up, whereas now she can.

“However, we were struggling to get specialist equipment for Grace which she wasn’t entitled to on the NHS until she reached the age of ten. Equipment for disabled children is so expensive – we didn’t know what to do. I spoke to the welfare team at RAF Cosford where I was based, and they suggested I contact the RAF Benevolent Fund.”

The Fund arranged for an occupational therapist to assess what equipment Grace needed and the family was awarded with grants for an electric wheelchair, a specialist bed and an adapted car seat.

Neil said:

“The power chair was about £18,000, her bed was £4,000 and her car seat was in the four figures. The costs were insane. So having this from the Fund was life-changing. The chair was fully adapted to Grace’s needs – it gives her the physical support she requires and enables her to sit up nice and straight. She can now get out and about, it’s given her the freedom she didn’t have before. She blasts through the house and garden in her chair!

“Don’t get me wrong, it’s been a hard few years, but the Fund has enabled us to have a normal life. Well, as normal as it can be. She goes to a Special Needs school and uses the chair there. She has her independence.

“Grace has had the chair for nearly three years now, but it will last a while as it’s just the seat that needs adapting as she grows. The motor base could last another ten years.”

Neil served in the RAF for over 24 years as an MT driver. He was posted at RAF Lossiemouth, RAF Stafford, RAF Leuchars, RAF Wittering, DST Leconfield as well as other stations during his career, and was also deployed several times to Iraq and Afghanistan. He decided to leave his full-time RAF career in April 2022, before joining the Reserves in January 2023.

“I left the regular Air Force because I couldn’t commit while looking after Grace – she’s my number one priority. The Reserves gives me a great balance – I do four or five days a month and I’m a driving instructor too. It means I can be there for Grace and take her to any appointments.”

The Fund also provided some financial assistance towards the family’s wheelchair accessible vehicle, which allows them to spend quality time together outside of the house.

“The vehicle has enabled us to function as a family – we have the freedom to go to places without constant upheaval. We can go shopping and to the park, and Grace can speed off and do her own thing too.

“We received the worst news of our life in 2017 when Grace was diagnosed. But the world keeps on turning. Grace is tough, but she doesn’t know anything different. Nothing fazes her.

“We don’t know what the future holds for Grace. I don’t think she would, as she’s doing well at the moment, but she could pass away this weekend, or she may still be here many years down the line. But knowing the Fund will be there whatever happens is so reassuring. I’m so grateful for the support we’ve received.”

You can find out about the support the Fund provides here.

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