We hope you all enjoyed the summer. As we move into the autumn months, we’re delighted to welcome several new applicants to the charity — among them are Margot, Alex and twins Fox and Lili.
‘Margot's Big Build’ will create a downstairs bedroom and an accessible kitchen tailored to her needs, once the additional £45,000 required beyond the Disabled Facilities Grant and top-up funding has been raised to cover the project costs.
Margot’s parents tell us:
“Margot is a bright and courageous 5-year-old. When she was just 20 months old, her life changed forever. She suffered a brain haemorrhage caused by a ruptured arteriovenous malformation (AVM) — a rare condition that led to a stroke and a significant acquired brain injury. Since then, Margot has faced immense challenges with incredible bravery. Her resilience and determination continue to inspire everyone who meets her.”
“Margot’s injury has affected many aspects of her life, including her mobility, communication, and cognitive development. Creating a ground floor bedroom will be life-changing for Margot. It will allow her to safely use her wheelchair on difficult days, reduce the risk of falls on the stairs, and give her full access to her home. Most importantly, it will support her independence and dignity. Despite everything she’s been through, Margot continues to smile, learn, and fight. Her journey is a powerful reminder of the strength and spirit of children — and of the vital role that community support plays in helping them live full and meaningful lives.”
We’re delighted that Margot’s family have already got off to a flying start with their fundraising, aided by direct donations to Margot’s project page, together with a generous £5,000 grant from Teaching Staff Trust pledged towards the works.
‘Alex’s fight for independence’ will reconfigure the ground floor of the family home to provide a level access bedroom and bathroom for 7-year-old Alex, with external access and parking to meet his needs.
With a shortfall of £41,045 to meet the project costs after council funding awarded, Alex’s mum advises:
“Alex predominantly crawls but is learning to walk and can achieve 5-10 steps occasionally with splints but needs an open/level environment with support from an adult. The current layout is unsuitable for his needs as spaces are not easily accessible, there are no ramps and narrow entrances make it extremely difficult to navigate around the house. Alex gets easily overstimulated and will start stimming/rocking or banging his head against hard surfaces/ radiators. The aim will be to create a low arousal environment and stimulate Alex so he can reach his full potential and gain some independence with support as he grows.”
“The reconfigured layouts means Alex’s spaces will link together on the same level so will be wheelchair accessible with access outdoors. It will provide a much-needed ground floor bedroom and bathroom as currently I have to carry him upstairs. This is becoming increasingly more dangerous as he grows. Intervention is needed from an adult to stop Alex from harming himself and to help him interact with toys/surrounding environment appropriately and safely. My hope is Alex will grow up to be an independent/confident person and that his additional needs will not prevent him from achieving any aspirations/interests he may have.”
Similarly, the works for 6-year-old twins – ‘Fox & Lili's Home’ – will extend and reconfigure the ground floor of the family home, creating two wheelchair accessible bedrooms for the children plus a shared bathroom, with tracking and hoisting installed throughout and level access provided throughout the ground floor. The cost of the project, once funding has been awarded through the council, leaves a shortfall of £120,000 to meet the building works.
As the twins’ parents explain:
“Fox and Lili were born in 2019 with genetics so rare, they have never been reported in another human. Due to their unique condition, we can't predict what their lives will be like but we know they need a supportive and safe environment. Our plan is to renovate and adapt our home to become an inclusive and inspiring environment for Fox and Lili to grow up. We want to create a usable, happy space that does away with the barriers we often face.”
“Along with all our savings, we have been awarded the Disability Facilities Grant to help finance the build but it is a drop in the ocean for what we need, so we are investigating alternative ways to find the money to build a home that will make all the difference to Fox and Lili, and ensure their lives are the very best they can be, in a world that wasn’t designed for them.”
Whilst these new projects commence on their fundraising journeys, others have drawn to a successful close – the latest of these being for 9-year-old Leon and his family, with the creation of ‘Leon’s downstairs bedroom and wet room’.
Leon’s parents elaborate on the benefits these adaptations have brought about:
“As Leon has been getting older, bigger and stronger it was becoming increasingly difficult carrying him up and down stairs. Now Leon has his own downstairs bedroom and bathroom we no longer need to carry him up and down stairs or lift him in and out of the bath. With the adaptations being made it has allowed us all to feel more confident knowing Leon is not restricted – having his own safe space and having ramping out the front and back of our home for easy access.”
Please do get in touch if you have any fundraising events, activities and ideas you’d like to share with us; or if you would like to apply for a grant or to fundraise through Sullivan’s Heroes.
Thank you for your ongoing support, it is greatly appreciated.
