THE OBJECTIVE
Three-year-old Amelia suffered brain damage around the time of her birth and was diagnosed with cerebral palsy at six months old. She spent almost half of her first year in hospital with severe gastric and reflux issues and now relies on tube feeding.
Amelia is a wheelchair user and is non-verbal. A lack of muscle control means she is unable to sign, making communication with her mum and her baby sister, Raya, much more challenging.
Her mum, Karis, has been working with both the NHS and her local council’s occupational health teams to understand Amelia’s needs. The family have been awarded a local authority grant to make some of the structural adjustments needed to their home.
Karis – who is a painter and decorator by trade and volunteered on Toby’s project – is grateful for the grant, but it doesn’t cover the full cost of the extension needed to build a ground-floor bedroom and wet room for Amelia.
Karis has approached Band of Builders for help to cover the shortfall and complete this essential project for her family.
MEET AMELIA
THE BACKGROUND
Karis knew that Amelia had suffered brain damage around the time of her birth, but neurologists waited and monitored her development before diagnosing her with dyskinetic cerebral palsy (DCP) at six months old.
DCP is a neurological condition resulting in involuntary and uncontrollable muscle movements, including twisting (dystonia) and Chorea (jerky/abrupt dance-like movement). In Amelia’s case, it has manifested in both cognitive impairment and mobility issues.
During her first year of life in particular, Amelia was in and out of hospital with severe gastric issues and an inability to swallow. She has since had a percutaneous endoscopic gastrostomy (PEG) tube inserted through the abdominal wall into the stomach, providing her with direct nutrition, fluids and medication.
The repeated hospital stays have been tough on Amelia and her family, especially in the first couple of years. Karis says the hardest part has been seeing her daughter in pain and distress without being able to communicate easily with her.
Despite the challenges, they are overcoming communication barriers together. As Amelia has grown, she has become happier, with an infectious beaming smile.
She can now roll to reach one of her toys, and her pride at her increasing sense of independence is clear for all to see. She is now able to move into a W-sitting position – much to her delight.
Caring for Amelia in their current home is difficult for Karis. She ideally needs a larger downstairs bedroom and wet room, as well as improved access outside, to help manage daily care and get Amelia safely to appointments.
THE PROJECT
Amelia requires a larger bedroom on the ground floor with enough space for wheelchair access, plus an adjoining wet room.
The Projects Team at Band of Builders have been working closely with the local authority on the best way to work together to build a 4.5 m x 3 m extension.
The proposed extension is currently going through the planning process. The plan as it stands is for Band of Builders to dig the footings and construct the shell of the extension, while the local authority grant will cover the windows, doors and internal works up to the finishing stage.
Once this has been completed, Band of Builders will return to carry out final improvements, such as levelling the garden and installing ramps.
These changes will make everyday life significantly easier for Karis and help Amelia to move around her home more comfortably – while also making it easier for the family to attend appointments and get out of the house together.
If you have the skills and time to volunteer on this project, we’d love to hear from you. Register your interest for Amelia’s Project.
When: Work to start in July
Duration: TBC
Where: Norwich, Norfolk
Trades Required: TBC – we are also looking for a volunteer to lead this project.