It’s been a ‘good news’ week for the family of disabled eight-year-old Elise Kemp from Taunton.
Newlife Foundation for Disabled Children is providing vital funding to help Elise, who has Spinal Muscular Atrophy (SMA), get the hi-tech wheelchair she so urgently needs. “I cried when I found out we had got the funding this week,” said mum Lucinda Carter.
The charity has also reported a breakthrough in medical research funded by Newlife, which has just discovered a plant chemical that could potentially reduce the symptoms of the condition.
University of Edinburgh scientists have found that plant pigment quercetin – which is found in some fruits, vegetables, herbs and grains – could help prevent the damage to nerves associated with SMA, the childhood form of motor neuron disease.
The findings could pave the way for new treatments in the future for the condition, which leaves children with limited or no control of their movements.
Professor Tom Gillingwater, who led the study, said: “This is an important step that could one day improve quality of life for the babies affected by this condition – and their families. There is currently no cure for this kind of neuromuscular disorder so new treatments that can tackle the progression of disease are urgently needed.”
SMA has left Elise dependent on a wheelchair – but sitting upright for longer than 20 minutes at a time causes excruciating pain.
Elise, a pupil at Creech St Michael Primary School, urgently needs a hi-tech powered wheelchair that will not only allow her to lie flat to alleviate the pain but stand upright to help strengthen her muscles, aid digestion and allow her to mix with her friends at eye level and join in more activities.
Elise’s mum Lucinda Carter said: “Her existing wheelchair is coming to the end of its life – but there is an additional problem. Elise had an operation last February to insert rods to correct the scoliosis in her spine; her hip has since dislocated which causes a lot of pain so she needs to lie down a lot. Unfortunately, the current chair won’t tilt more than 30 degrees so she has to go and lie down between lessons at school; because of this she can’t tolerate more than two hours at school, three or four days a week. At home, because of the pain, she hardly spends any of her time in the wheelchair.”
Lucinda added: “This equipment for Elise will not only alleviate the pain but, because it has a sit-to-stand feature, she could stand up to reach things she has never been able to get anywhere near before and join in with more things at school. It will change her life in so many ways. Unfortunately, this specialist wheelchair will cost £19,405 – with local wheelchair services contributing £2,276.”
Fundraising by family and friends over the last six months has raised in excess of £4,000, but with over £12,000 left to find, Lucinda turned to leading UK children’s disability charity Newlife Foundation for help. When Elise was just two years old, Newlife funded a £12,720 wheelchair.
Newlife recently announced it had hit the £10million landmark in terms of funding specialist equipment for disabled and terminally ill children around the UK, since 2005. However, statutory cutbacks across the country have led to a surge in applications to the charity for vital equipment to facilitate everyday life. This increased demand has prompted Newlife to call for ‘local heroes’ to come forward to fundraise or donate towards the cost of specialist equipment for children in their county.
If you would like to help raise money to help other children in Somerset (the charity is currently working with a further four families in the county with equipment needs totalling £6,282), the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Newlife CEO Sheila Brown, OBE, said: “Newlife guarantees that 100 per cent of any gift or donation will go directly to provide equipment for disabled and terminally ill children – and donors can ring-fence their money to a specific county.”
For full details of the charity’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – freephone 0800 902 0095 – or go to: www.newlifecharity.co.uk
Pictured: Elise Kemp.