Help fund lifesaving drugs for toddler with life limiting condition.
Lorcán has cystic fibrosis (CF) Lorcán is two years old. Lorcán has been fighting a potentially life shortening lung infection for the last six months and treatment isn’t working.
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. Over 240 people in the U.K. have died waiting for it to become available. Vertex and the U.K. government are letting people with CF die because of a disagreement over cost.
Parents have had to find an alternative way of getting these drugs for their children and the Cystic Fibrosis Buyers Club have found a generic copy of the drug that individuals can legally import, it is a fifth of the cost. This is however still beyond what we can pay.
We are asking for your help, this could be in the form of 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.
Should we raise more than the drug costs the money will go to others in this awful situation. Should a deal be reached with Vertex or the government decide to make a generic copy available on the NHS (we dearly hope that one or other will happen soon so that everyone in need has access) the money raised will go to other similar causes/charities. In the meantime thank you for helping us to Look After Lorcán. Thank you so, so much.
#lookafterlorcan #lifesavingdrugsnow #cfbuyersclub #cysticfibrosis
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- Susan Sharvin
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Fundraising team: Team LAL (20)
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