Thanks for taking the time to visit my JustGiving page.
Our 22m daughter Cora has an incredibly rare genetic disease; KIF1A. The impacts of this are severe. Cora has not progressed much beyond the stage of a newborn baby and has substantial visual impairment. Her chest muscles are so weak that even a common cold could kill her and almost has on many occasions.
Cora has been a patient in the intensive care unit so many times now that she has become something of a 'celebrity' there. I can not imagine finding a more dedicated, competent or loving team of doctors, specialists, nurses and therapists.
They do everything possible to care for Cora's medical needs and the emotional needs of the whole family. Her brother Casper actually enjoys his visits because of the interactions with the staff, being allowed to cuddle and play with his sister and even being able to put on a ninja show for the nurses!
COSMIC supports the Children’s Intensive Care Unit at St. Mary’s by helping patients and their families and enabling the dedicated team to continue providing care to hundreds of critically ill children from all over the country each year.
They have facilitated many lovely moments for Cora such as visits from therapy dogs and singing fairies. At Easter, she was given the most enormous Easter bunny and Casper received more than his body weight in chocolate eggs.
Being separated from a very sick child in intensive care is harder than I could describe. COSMIC are currently raising funds for family accommodation within the hospital. Having a home from home base would help to make each family’s stay so much more bearable; somewhere to nap, cry, prevent endless roaming of Paddington streets and provide a 'normal' space to be with the rest of the family.
Please support us in giving something back to this incredible institution.
Sarah, Alex, Casper and Cora x