A mother from Lewisham is raising money to help her disabled daughter fulfil her athletic dreams by providing her with a sports-adapted wheelchair.

Irene Ansett is aiming to raise £5,000 to fund a TiLite Twist athletic wheelchair for her nine-year old daughter Millie.

Millie suffers from spina bifida (myelomeningocele), a life-long condition and neural tube defect that affects the development of the spine and the brain; the spine doesn’t form correctly in the womb and causes a gap in the spine.

The nine-year-old is a fan of wheelchair athletes Lily Rice, Aaron Fotheringham and Tanni Grey-Thompson and her dream is to follow in their footsteps.

The new wheelchair would give Millie confidence and the ability to complete in athletics, as well as attend skateparks with friends. The Simba wheelchair that Millie currently has is growing too small and doesn’t provide her with enough support or comfort. Ansett said that “she cannot be an active user in it.”

Irene Ansett told Eastlondonlines: “This new wheelchair would allow her to catch up to peers. She would be more independent in so many ways. She would have more confidence. She could use it on skateparks and athletic club. It also would give her more stability.”

The NHS won’t fund the wheelchair that Millie desires, neither will charities due to the type of wheelchair that it is or lack of resources. Approval would be needed from NHS services that the wheelchair is beneficial.

Dr Angelika Razzaque, Lead Clinical Director for children’s services at NHS Clinical Commissioning Group (CCG), said: “If a child has an identified need for a wheelchair, the NHS would pay for the equipment. But because of finite resources, specialist equipment that’s required for athletic use wouldn’t normally be covered by the NHS.

“The NHS supports people to connect with many charities in the UK that may be able to assist people with the funding of athletic equipment needed by people with disabilities.”

Shine is a UK-based charity that supports families with young children with spina bifida and provides them with information through their project, Early Intervention. Shine gives support for parents in the difficult and early days.

Gill Yaz, Health Development Manager of Shine Charity told Eastlondonlines: “Millie’s wheelchair won’t be funded by the NHS, which takes a very narrow view of the health of children with disabilities. It’s essential that all children are fit and active, and able to take part in games and sports, like other children, and it’s great when children can develop these healthy habits early on.

“However, disabled children may need more specialised equipment to do so. It’s a shame that the NHS doesn’t use its enormous buying power to get children really active, instead of focussing on the narrow (and cheapest) view of mobility. Life-long wheelchair users need the best and the lightest wheelchairs possible from the beginning, to avoid damage to the neck and shoulders later in life.”

The fundraiser was created in July and has currently raised £1,926 of the £5,000 goal. This includes donations from 29 donors, as well as from previous fundraisers the family has held.

The TiLite Twist wheelchair costs £3,818 and the extra money raised will be donated to the S-Factor Academy, an inclusive athletic club that has helped Millie and that she also likes to attend.

Ansett told Eastlondonlines Millie has already won four medals over the summer at the S-Factor academy. According to Ansett, Millie first showed an interest in wheelchair athleticism and skateparks thanks to her mother who created a booklet for her on athletes who also suffer with spina bifida.

Ansett told Eastlondonlines: “She has anxiety issues. She feels like she can’t do anything due to being in a wheelchair. The wheelchair we are trying to get will give her more independence. She sees a lot of doctors that can be invasive and having lots of tests and time off school that upsets her. She often says she needs a break. She gets down about not being able to walk.”

Her mother said the wheelchair would also improve life for Millie at school. She said: “Millie’s school has been a challenge to get them to continue the support… Her school surroundings aren’t suitable as they have climbing walls, stage and money bars, etc, that she can’t access.”

Ansett also described how Millie receives a lot of treatment for her condition. She has to have regular MRI scans, ultrasounds and sees many medical professionals. Ansett added: “She’s had two tenotomy surgeries to release the tendon on her foot. She wears a splint and has had to wear a spinal brace, and also has to drain her urine with an overnight bag…She also has been prescribed lifetime antibiotics to prevent urine infections.”

Millie has to have a Mitrofanoff and bladder augmentation. This consists of a seven-hour surgery and a three week stay in hospital with a recovery time at home of six months. She is also due to have a bladder and bowel surgery in January.

Millie has two siblings, eleven-year old Isabella, who suffers with autism and seven-year old Jake who is profound deaf.

Ansett says that family life can be hectic due to having siblings with disabilities as well, but she describes as having a routine-like schedule and a supportive husband, Peter.

Peter told Eastlondonlines: “We’ve had to fight for everything that she needs and for my other children. For example, education and medical professionals. Getting this wheelchair is another obstacle we have to face.”

To donate, please visit: https://www.gofundme.com/f/Ti-lite-twist-wheelchair