Fundraiser launched for essential equipment to aid disabled Chatham girl, 6, suffering from ‘mystery condition’

The family of a six-year-old girl who is disabled as a result of a “mystery condition” is fundraising for “essential equipment”.

Chatham mum Rachael Swadling’s daughter Hallie Spree was born on March 19, 2019 and underwent an operation at 32 weeks to correct duodenal atresia in her stomach.

As she grew, she was able to pull up to a standing position and used to be able to walk holding her mum's hand, but that suddenly stopped.

Rachael was told her daughter was born with two valves on one side of her heart. Hallie was also hospitalised when she was 10 months old after she stopped breathing for 65 seconds.

When her daughter was 18 months old, Rachael managed to get an appointment for her at Snapdragons in Strood, a children and young people’s health and wellbeing centre.

As soon as the consultant looked at her daughter, he said she had hypotonia, which means she has decreased muscle tone.

However, the now six-and-a-half-year-old has still not had a formal diagnosis, as hypotonia is a symptom of something else.

Rachael said: “We've been to lots of doctors' appointments with different specialists, but unfortunately, we still have not got a diagnosis.

“We tried to get in touch with someone about possible steroid injections as they would be a good option to help Hallie with natural muscle growth, but we don't know where we stand with that at the moment”.

Hallie had her hips X-rayed around six months ago, which found that her bones were not sitting in the correct place, causing a popping sound.

Now, the family is raising money to buy duplicate equipment for her – including a specialist bed which costs around £5,000.

Rachael, who co-parents with Hallie’s dad Connor, explained: “On weekends and on half-terms, Hallie stays with her dad and grandparents, but unfortunately, due to the NHS funding, there is a lot of equipment that cannot be duplicated to be kept there, especially large things.

“The main reason for the fundraising is for a specialist bed to have at her grandparents’ house.

“It's almost like a hospital bed; it's got foamy sides that can be pulled up and down.

“The bed base can come up which prevents Hallie from getting pressure sores, and it can go down to the floor so that she's able to shuffle off the bed to have a bit more independence.

“It’s been life-changing for me. It makes life so much easier being able to put the bed up and down to the height that you need to be able to get her.”

On Saturday, October 18, family friend Kirsty Smith, who runs Kirsty’s Kitchen cakes and buffets, held a fundraiser at Holy Trinity Church in Twydall, where they raised around £5,000 through selling cakes and coffee.

Friends and family also made cakes, and more than 80 tombola prizes were donated by local businesses and individuals.

The family is also hoping to raise enough money for further “essential” duplicate equipment – which also includes a cough assist, mobile hoists and home adaptations at her grandparents’ house.

Rachael said: “Hallie has low muscle tone, so her lungs obviously don't expand the same amount as a toddler her age.

“She is unable to take a deep breath in because of the muscle, so the cough assist puts air in and then expels it out, so it's basically like a resistance band, but for the lungs.

“This equipment is life-changing. It's something that we need for Hallie so that she can move on in day-to-day life.

“She needs it to be able to access the same parts of life as everybody else can.”

The family also raised money to buy Hallie a Tiny Trax last year, which is a children’s powered wheelchair, which Rachael says has given her a lot more independence.

Hallie has also had help from Step and Learn, a Medway-based charity dedicated to improving the lives of children with physical disabilities through conductive education, a system specifically developed for children and adults who have motor disorders of neurological origin.

Rachael explained: “We've been doing a lot of weight-bearing on her knees at Step and Learn, which is a huge, huge step.

“Now, I think she's at the age where she wants to be independent, so she's getting a lot better.

“Her head still flops, and I don't think that's going to go away until obviously we've worked really hard on lots of different things. But she no longer struggles to sit up for long periods of time.

“Like any child, she gets tired. But she's very vocal, and she tells us exactly what she needs and exactly what she wants.”