Tay Sachs Family Conference Brings Tears as well as Joy

Dan Leonard | June 19, 2012

The National Tay-Sachs and Allied Diseases Association (NTSAD) had its 34th Annual Family Conference in sunny Orlando, Florida April 19th to 22nd. Well, in reality it was only occasionally sunny, but the sometimes rainy, sometimes sunny weather was a good metaphor for the event, which was full of laughter and fun, but also had very solemn moments as well.

This was my first family conference since joining the Patient Advocacy team last November, and it was quite a profound experience. The first person that I met was a woman who had lost her daughter to Tay-Sachs 30 years ago. This was her first time coming to a conference, and the first time in her life she had seen anyone other than her daughter with Tay-Sachs. She said the first day was very tough for her, but after the initial sadness passed that she was so happy to be there meeting other parents and their children.

One of the first sessions I attended was an update by two clinical researchers, a topic that created a lot of buzz amongst the attendees because there is currently no available therapy and one is desperately hoped for.

Another very different session I attended was the Hope Chest. Emily, the mother of Ronan (both pictured here), a young boy affected by Tay-Sachs, asked other parents to write their hopes and dreams for their children on a piece of paper and then put them into the box. She then read them aloud, and it became clear that, even though children with Tay-Sachs, Canavan, and other related diseases are sadly destined to die prematurely, that it is still possible to have hopes and dreams – something as simple as for your child be comfortable, or that your child be surrounded by loving family and friends… You can read more about Ronan and Emily here: http://www.ntsad.org/index.php/meet-ronan. You will also find a link to an interview Emily did with “Talk of the Nation” on National Public Radio, and an article Emily wrote appeared in the New York Times on October 16, 2011.

There were many other diverse sessions including symptom management, commonly used equipment, sibling workshops, and a moving Commemoration Ceremony that ended with a butterfly release. Through it all photos were being taken by Soulumination, a non-profit that “celebrates the lives of children and parents facing life-threatening conditions by providing professional photographs of these special individuals and their families, free of charge,” and many beautiful images can be seen here and at their site.

I met so many, children, parents, adult onset patients, staff members and Board members, and it was such an honor to meet every one of them. I remember someone telling me that when I got home to Boston that I would hug my 6 month old daughter a little extra tightly and indeed they were right. Thank you to NTSAD for taking in this rookie and helping him learn the ropes. And thank you to everyone I met for reminding me to never forget the things that really matter.

“We all come from a place of different locations, ethnicities, religions, rungs on the ladder of social status, affluence, ideals, diseases, and perceptions.  But when we come together we are blind to it all, because we are there to unite ourselves in the one thing that makes us all the same.  I have experienced no greater equalizer than being a parent to a dying child.”   ~ Becky, mom of Miss Elliott, received her angel wings February 3, 2012 at age 3 ½

                   

Photos from left: A young girl at the butterfly release; Emily Rapp with her son Ronan

 

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