My Little Sister Emmie
Emmie has a rare genetic condition called Kniest Dysplasia, which only one in a million people live with in the world.
Emmie is 5 years old with a rare genetic condition called Kniest Dysplasia, which only one in a million people live with, in the world. Emmie was born with a cleft palate and was tube fed as a result. The family were told that she required extensive surgery on her eyes, her feet, her cleft palate and on her spine too which gave everyone hope that her quality of life would improve, but at Christmas time in 2020, the family were given the heart breaking news that any sort of surgery was too risky for Emmie and her chances of survival would be slim and sadly doctors expect her now not to live past her 10th birthday.
Emmie’s family approached Tree of Hope to help access hydrotherapy, it helps with joint pain and allows her to move better, and they also want to ensure that the home and garden is accessible so that she can play with her big brother, Adam, who she adores.
“Our greatest aim is for Emmie to be happy, that’s all we want. We aim to enjoy every moment and if your child knows that you love them and you spend quality time with them, then that’s the most important thing. We’ve honestly been blown away by the support we’ve received from Tree of Hope!”
Emmie's family have put on a range of different fundraisers, from a Summer Ball, sponsored 'Emmie Shuffle', Bingo night and a family fun day. Emmie's supporters have also rallied round to raise funds by climbing the Staffordshire 3 Peaks, running half marathons and completing Ultra Challenges!
