Today we remember Dylan James Manning (DJ) who died on this day two years ago from a rare generic disorder called Tay-Sachs Disease. He was three months shy of his 5th birthday.
Tay-Sachs is a preventable but fatal disease, historically found mostly in Ashkenazi Jews, however research has categorized French Canadians, Louisiana Cajun, Pennsylvania Dutch as high risk, and preliminary data suggests persons of British Isle and Italian decent are to be considered high-risk.
A simple blood test can determine if you are a carrier of the gene –both parties must be carriers and you then have a one in four chance of having a child with the disease.
Andy’s very good friend is Dylan’s dad. They were neighborhood friends who grew up together, playing basketball and acting as kids do. Andy has said time and again that you never think this could happen to someone you know. When I learned of Dylan's condition several years back I remember feeling absolutely heartbroken for the family. We tracked his progress daily and always had him and his family in our prayers. Then, as his days came near the end and finally we received news that Dylan was no longer alive, I broke down. My Alexandra was only 20 months old, and I couldn’t have imagined what their family was going through. How that mother will never hold her baby again.
Andy and I attended the services held by the family and I was amazed at the unbelievable strength the family displayed. They have said they live for Dylan-- His life carried with it a much larger purpose: To educate people about how the disease can be prevented.
Each year we vow to remember Dylan’s life and continue his legacy by spreading the word—Andy by wearing the blue “Just Believe” bracelet he hasn’t removed in nearly four years--and by having our children participate in a balloon launch in Dylan’s name. [Photos from last year’s balloon launch are above.]
For more information, please visit http://www.ntsad.org/. To learn about DJ and his life please see http://www.djsfoundation.org/ or http://www.caringbridge.org/cb/viewJournal.do?method=executeInit.
Tay-Sachs is a preventable but fatal disease, historically found mostly in Ashkenazi Jews, however research has categorized French Canadians, Louisiana Cajun, Pennsylvania Dutch as high risk, and preliminary data suggests persons of British Isle and Italian decent are to be considered high-risk.
A simple blood test can determine if you are a carrier of the gene –both parties must be carriers and you then have a one in four chance of having a child with the disease.
Andy’s very good friend is Dylan’s dad. They were neighborhood friends who grew up together, playing basketball and acting as kids do. Andy has said time and again that you never think this could happen to someone you know. When I learned of Dylan's condition several years back I remember feeling absolutely heartbroken for the family. We tracked his progress daily and always had him and his family in our prayers. Then, as his days came near the end and finally we received news that Dylan was no longer alive, I broke down. My Alexandra was only 20 months old, and I couldn’t have imagined what their family was going through. How that mother will never hold her baby again.
Andy and I attended the services held by the family and I was amazed at the unbelievable strength the family displayed. They have said they live for Dylan-- His life carried with it a much larger purpose: To educate people about how the disease can be prevented.
Each year we vow to remember Dylan’s life and continue his legacy by spreading the word—Andy by wearing the blue “Just Believe” bracelet he hasn’t removed in nearly four years--and by having our children participate in a balloon launch in Dylan’s name. [Photos from last year’s balloon launch are above.]
For more information, please visit http://www.ntsad.org/. To learn about DJ and his life please see http://www.djsfoundation.org/ or http://www.caringbridge.org/cb/viewJournal.do?method=executeInit.
4 comments:
I am without words...what a beautiful way to remember him and spread the knowledge.
Thank You
What a great way to remember Dylan, not to mourn, but celebrate his life! That is so beautiful.
what a great story. thank you so much for sharing, yvonne.
I was sad we missed going this year - we said our own prayers for Dylan and I've been chatting with Sherri and keeping them in our prayers even more these days!
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