Portrait of Hope
Meet Emmie
Emmie is 6 years old and was born with a rare condition called Kniest Dysplasia. As a result Emmie has a cleft palate, short limbs, club feet, sight and hearing loss and spinal compression. In lockdown, Emmie’s family’s world fell apart when they received the devastating news that surgeries which would protect her skeleton from supressing the use of her limbs and lungs, would be too dangerous and means she has a life limiting condition and isn’t expected live beyond her tenth birthday.
Coming to terms with Emmie’s diagnosis has taken an immense toll on the family, exacerbated by the guilt that their home was no longer suitable for her needs. The family turned to Tree of Hope for support looking for help with a series of specialist home adaptations to ensure Emmie can access her home freely and with dignity and to ease the financial burden that would allow them to fund the home renovations needed to the extent that someone like Emmie needs.
Tree of Hope have been able to help and provide a way forward for Emmie’s family, to allow the family to focus entirely on making memories with Emmie; memories where she is happy, cared for, and accommodated.
To date, having raised over £50,000, Emmie’s family are part way through their renovations. The project so far includes a hydrotherapy pool, project architect, a walking aid, damp proofing, a structural engineer, and materials and labour for an accessible garden which she wasn’t able to access on her own, now offering Emmie space, safety and tranquillity.
The next phase of their plans are now underway including structural work on the downstairs wet room and a through floor lift. All Emmie’s adaptations are so her family can give her the greatest life possible, where she can be independent and free in her home, while her unique needs are taken care of in a way that boosts her self-esteem.
“We want to Emmie to have everything that she is going to need to help her to stay strong and keep moving. I also don’t want her to struggle to do basic things when there are adaptions and aids that can help her. We don’t know everything that we are going to need for her in the future but we want to be as prepared as possible.”
