Look After Lorcan
Thank you for taking the time to visit this JustGiving page.
This is Lorcán. Lorcán has Cystic Fibrosis (CF). He is two years and nine months old. Lorcán has been fighting a potentially life shortening lung infection for the last year. There is an amazing drug called Orkambi made by Vertex that is not funded on the NHS. This drug could help Lorcán and thousands of others with CF. Over the last four years an estimated 270 people in the U.K. have died waiting for it to become available on the NHS. Vertex and the governments of Northern Ireland, Wales, and England are letting people with CF die because of a disagreement over cost. Because of this parents have had to find a way of getting these drugs for their children.
The Cystic Fibrosis Buyers Club have found a generic copy of the drug that individuals can legally import, at a less than a quarter of the cost. This is however still beyond what we as a family can pay. We are asking for your help in the form of either donations, by joining us in fundraising for Look After Lorcán, or by raising awareness by sharing this. Lorcán is a wonderful little person and sadly we need your help to look after him please. Should we raise more than the drug costs the money will go directly towards helping Lorcán in other ways such as buying additional physiotherapy equipment, nebulisers, or funding exercise classes. Should a deal be reached with Vertex or the Government decide to make a generic copy of Orkambi available on the NHS (we dearly hope that one or the other will happen soon so that everyone has access) the money raised will be used similarly. In the meantime, thank you for helping us to Look After Lorcán. Thank you so, so much.
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