Thousands raised for ‘bright and courageous’ six-year-old to make family home safe and accessible
Thousands of pounds have already been raised to help make a “bright and courageous” six-year-old’s family home safe and accessible after an unexpected health journey began when she was just 20 months old.
Margot Jones-Billington lives with a significant brain injury following a brain haemorrhage and stroke when she was four months from celebrating her second birthday.
Her condition has recently worsened and she can no longer climb the stairs safely due to increasing mobility issues caused by neurological movement disorder dystonia – and the family now face a new and urgent challenge.
Margot is too heavy for her parents Laura and Ben to carry, and they need to adapt their home to give her the safe and accessible environment she needs.
Many have already helped to support Margot on her journey since May 2021, which has helped the family fund specialist therapies that have improved her quality of life, and now they have set up an online fundraising page for this new goal.
The family plan to build a ground floor bedroom and accessible kitchen, allowing Margot to move around safely, use her wheelchair on difficult days, and maintain as much independence and dignity as possible.
They have been awarded a disabled facilities grant but it does not amount to the full cost, so the hope is to raise enough to cover the shortfall.
The family are being supported by Sullivan’s Heroes, a fantastic charity which helps families of disabled children to access grants and additional support. All donations go through them to ensure 100 percent goes towards the big build.
Described as “bright and courageous”, Margot suffered ruptured arteriovenous malformation in May 2021 – and this rare condition led to a stroke and a significant acquired brain injury.
The fundraising page reads: “Since then, Margot has faced many challenges with incredible bravery. Her injury has affected her mobility, communication and development.
“She works hard every day in therapy and, thanks to previous fundraising support, she’s made amazing progress. But her condition, particularly worsening dystonia, has made it increasingly difficult for her to move around safely, especially at home.”
‘It would change Margot’s life’
Talking to the Chronicle & Echo, Margot’s mother Laura Jones-Billington explained that their fundraising efforts for therapy and equipment began in December 2022.
They were out of the acute stage of Margot’s journey, as she had undergone brain surgery, stabilised and her care was transferred to the community. However, there was not the provision in place from the NHS to get the care she needed.
Margot needed to rehabilitate and relearn some of the skills she had lost, but was not being given the right amount of physiotherapy, occupational therapy, and speech and language therapy.
“It was a tough decision to ask people to donate money but we decided to do it,” said Laura. “We raised nearly £31,000 and now we’ve raised nearly £10,000 for her home adaptation.
“The difference it’s made has been unbelievable to be honest. Margot has been able to do intensive therapy sessions for three weeks in different places for four hours per day. Constant therapy in a short space of time means she has made huge progress with her mobility and speech.”
Laura believes it is Margot’s communication which has come on the most in that time, and they have been able to buy her a communication device to support her speech. The money raised has also been used for physio equipment and weekly horse riding sessions.
“Unfortunately when Margot had her bleed on the brain and a stroke, it impacted every part of her life,” said Laura. “Her right side is weakened and doesn’t work properly and this makes everyday tasks difficult. She needs help from us with everything.”
The biggest impact is on Margot’s cognition and learning, as she does not always understand and struggles to maintain focus and attention. She also suffers from epilepsy.
Laura continued: “The bleed on the left side of her brain meant she lost all ability to communicate. She does speak but not at the same level you’d expect a six-year-old to. She really struggles with fatigue and it takes so much more effort.”
When the family began their fundraising efforts, Margot was three years old and her parents were able to carry and lift her. Now she is six, this is no longer the case.
“She isn’t able to safely access parts of our home and having her bedroom upstairs isn’t an option anymore,” said Laura. “We decided it was time to look at adapting our home and applied for council funding two years ago. It’s taken this long to go through.
“This would give her the dignity and independence she deserves. She doesn’t want to crawl up the stairs, be lifted or carried. This is future proof.
“It would change Margot’s life and provide her with safety, dignity, independence and confidence by being able to access everything in the house that she needs to.”