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2212 signatures so far! [view all signatures] Dilekçeyi hazırlayan: Tara A hereditary and often fatal disease afflicts trevor of Innisfail, AB. Pompe is caused by a mutation in the gene that produces the enzyme alpha-glucosidase, which the body needs to break down glycogen. As a result glycogen builds up in the body, causing damage to the heart and other muscles.Sufferers eventually die of respiratory or heart failure. 2212 have signed so far - help us get to 500,000.  We have achieved 0.44% of our goal. Let's keep going! Sign the petition! Details, Impact and Progress Without funding from Alberta Health and Wellness for an experimental drug which Trevor has been using on an clinical trial basis, for the last four years, his doctor expects him to be on an respirator within 3 months and gone before 6 months. There are 13 people diagnosed with Pompe in canada and 900 worldwide.Trevor has been using the drug Myozyme for the last four years with tremendous results. "This is totally a miracle drug for us...without it we wouldn't have Trevor, there's a 100%guarantee of that" said his mom Linda. "I'm scared" said Trevor "May is coming and no one is doing anything to help us". Trevor is scared because the clinical trial of the drug runs out at the end of may, leaving his family with nearly $500,000 annual cost. Trevor is now in grade 12, expected to graduate in June, but without the drug likely won't live to see September. If the provincial government funds Trevors intravenous drug, he could live decades longer. The province is currently reviewing whether to continue funding use of the drug. Why is this even an issue in a province like Alberta, or for that matter anywhere else in Canada. How can we even fathom allowing a newly graduated human being to die (or any person) , if it is a matter of finances. I'm certainly thankful that I did not have this looming over my head, as I graduated. Trevor is a survivor! Diagnosed with Pompe as a baby, doctors told his parents he likely wouldn't live past his 1st birthday. Lets help his plight... the family is urging Albertans to write Health Minister Ron Liepert and ask the provincial goverment to fund medication for all rare diseases. Strains of rare diseases/viruses are becoming prevalent and will continue to do so... what if it was your child,parent etc.? So I encourage you to join and invite all your friends to join. I myself personally do not know Trevor, but I couldn't imagine being in that scenario with my child. Lets do our part and with substantial supporting numbers, help the Health Minister put a face to Trevor, so that he has a fighting chance. Note: This service is provided as a service to TakingITGlobal Members. This petition does not necessarily represent the views of TakingITGlobal as an organization. |
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