"In September 2015 we were given the devastating news that our 15 year old son Scott has a rare incurable progressive disease of the bile ducts - Primary Sclerosing Cholangitis, PSC for short.
The progression of this disease causes destruction of the bile ducts, repeated infections, jaundice, fatigue, uncontrollable itching, tumours and many more challenging symptoms. In-turn the liver becomes scarred and damaged which ultimately leads to cirrhosis and complete liver failure. Scott is currently at stage 2 fibrosis, stage 4 is cirrhosis.
At present there is no known cure for the disease and a transplant is the only option when end-stage liver disease is reached.
We have been overwhelmed by the offers of support we have had from people wanting to fundraise and help us in raising awareness of this terrible disease and we have set up this page in support of two incredible charities that have provided amazing support to us since we recieved Scotts diagnosis.
Despite also having Ulcerative Colitis, which is common with PSC and Eosinophilic Oesophagitis, Scott is currently doing well. He is keeping a very positive, can-do attitude and is refusing to let this disease control his life. He is keeping fit playing basketball, which he absolutely loves and with his amazing scientific brain maybe he will be the one to find the cure for this hideous disease!
He is an incredible young man and we are very lucky and extremely proud to be his parents."
Laura and Alan Edmond
Laura has launched a worldwide appeal to raise funds for PSC Support and a Kings College Hospital charity. The Bo’ness & Carriden Band held a special concert for Scott, despite being on the other side of the world to him! There are upcoming activities planned including taking part in the Edinburgh Marathon this year. Watch this space for updates!