Layla was diagnosed with cystinosis at 18 months old she is now 3 years old .Layla is currently taking medicine’s 27 times a day as well as eye drops every 2 hours to prevent her from going blind due to crystals forming in her eyes. Later on this year Layla has to have an operation to have her legs straightened as they are so badly bowed from the ricketts disease this is just Layla and her parents day to day life now. At some point in Layla's future she will need a kidney transplant.

 Cystinosis is a rare disease that affects 150 people in the uk and only 2000 people worldwide. Cystinosis mostly affects children. It causes a substance called cystine (amino acid)  to build up in different organs of the body including the kidneys and eyes. This is a serious condition that makes the kidneys unable to reabsorb nutrients and minerals that are lost in the urine, other complications of Cystinosis may include ricketts, cornel cystine crystals, difficulty swallowing, hypothyroidism (the thyroid gland does not make enough thyroid hormone) and diabetes.

 Currently there is no cure. In the past it was rare for people with Cystinosis to survive into adulthood but thanks to charities such as Cystinosis Foundation UK there is real hope. The organisation funds research into the condition, provides support and advice for patients and families, and raises awareness of Cystinosis among the medical community.

PLEASE HELP US RAISE AWARENESS AND FIND A CURE !!