My son Sam was born in December 2009 with a rare genetic condition called Alagille Syndrome. The most severe aspects of his condition are a heart condition called pulmonary stenosis, and a liver condition called biliary hypoplasia.
Although Sam is doing amazingly well, the first few months of his life were terrifying! We had never heard of the condition and the lists of facts and figures on the internet were frightening. Sam lost a lot of weight and had persistent jaundice.
I e-mailed the Childrens Liver Disease Foundation to request some literature and was prompty contacted by their family liason officer. I finally felt I had someone to talk to and who would listen.
Life is still a whirlwind of hospital appointments and medicine, but we're getting there and I know CLDF will continue to support us.
As you read this, two more families will receive the devestating news that their child has a potentially life-threatening liver disease. Their lives have been shattered and will never be the same again. CLDF picks up the pieces giving thousands of families hope for the future.
CLDF is the country's lead charity supporting medical research into all childhood liver diseases, which strikes more families than childhood leukaemia. It also acts as an information hub for healthcare professionals and the general public, and provides a tailored support service for young people with liver diseases and their families.
Thanks for visiting my justgiving page. Pleas dig deep and give generously.
Love Taricia and Sam xx
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