My niece Lily Grace Foat is a fabulous 15 year old who was diagnosed with Ullrich Congenital Muscular Dystrophy when she was 3 years old. This is a progressive condition for which there is currently no cure. Lily walked up until shortly after she was diagnosed and has been confined to a wheelchair for the last 12 years.

For more info about UCMD please click here: www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/1814_ullrich_congenital_muscular_dystrophy

Lily developed Scoliosis a few years ago and underwent major surgery on her spine to aid her posture and lung function which was only a 1/3 capacity of her peers. In the Spring of 2014, Lily was fitted with a Percutaneous Endoscopic Gastrostomy (PEG) which is a way of introducing Food, Liquid and Medicine directly into the stomach.

In November 2014 Lily’s lung function deteriorated quite dramatically due in part to her gaining essential weight from her gastro surgery. After spending a few weeks unexpectedly in PHDU at Queens Medical Centre in Nottingham, the medical team managed to stabilise Lily’s lungs through positive pressure ventilation both at night and now through most of her waking day. She now relies heavily on permanent ventilation 24/7 and as a result of her lungs working harder it has resulted in her heart becoming weaker through the extra strain.

Lily never complains about her condition or the problems it inevitably causes her. Our aim is to use the sponsorship money raised to help Lily enjoy life to the best of her ability in an environment that is safe and secure.