Alan Charest has Sanfilippo Syndrome and this page is to raise awareness of what this syndrome is and also to raise funds for the National MPS Society. Currently there are no cures. When there are no cures the greatest gift is hope. Hope of tomorrow, hope for more smiles, more laughs, hope for a cure.
One of the best comforts we can have is communicating with other families that are experiencing the same hardships and knowing help is available when needed. The family support programs, funded by your donations, help families when insurance is denied or does not fully cover a medical durable good. The Society also provides a community for families and individuals affected to support each other through education on MPS and how best to care for their loved ones.
Medical research for treatments and cures is funded by donations and provide the hope to our family. The Society gives us hope because they will not stop funding research until each supported disease has a cure. This gets us through the difficulties of each day.
Alan was born into this world a happy smiling child like all children. He took longer to walk than most and by age two his speech was well behind where it should have been. We were lucky to have a diagnosis by age three which allowed Alan to be eligible to take the risk of a bone marrow transplant in the hopes of relieving some of his future suffering. Alan was lucky to survive the transplant and even luckier that it has helped reduce his physical symptoms. What little speech Alan has he is losing and he like all children with MPSIII will continue to lose his mental and motor functions. We ask that you continue to provide hope for tomorrow, more smiles and more laughs.
To follow more of my story visit my caringbridge page!
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The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.
Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information.