Friday, August 01, 2014

Massachusetts Area Trisomy X Support Group

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October 4, 2011

Massachusetts Area Trisomy X Support Group Meeting held on October 2, 2011 at Baystate Medical Center Pediatric Genetics Department. The meeting was a heartwarming success! We had 20 families interested and 11 families came with 10 girls ranging 15 months to age 23! Ironically the oldest girl and youngest girl won the raffles too!

Thanks to genetic counselor Sara Goldstein and her colleagues for providing activities for the kids during the parent discussions and for the raffle items.  Thanks to the Children's Miracle Network for the lunch. Thanks again to Sara
Goldstein and Baystate Pediatric Genetic department for hosting the meeting for us.

I began the meeting with an explanation on how I wanted to form a support group in our area and about Jessica's background and diagnosis at age 6. I introduced my daughter Christine who spoke about her Silver award project goal on how she wanted to promote knowledge of Trisomy X, increase awareness, and support girls with Trisomy X and their siblings with her support group called "Scrapping forSiblings" Christine also put together a poster board and scrapbook plus 23 welcome packages for girls with Trisomy X that were interested in joining our support group. She mailed 20 of the packages to 7 different states. I'm so proud of her! I'm also proud of Jessica for helping play with the girls during the parent discussions. Jessica is such a wonderful and caring girl and it showed!

Jessica & Christine
After Christine spoke we started with around the table introduction and background information about our families and our daughter's challenges and
strengths. It was very heartwarming and helpful to all.

I am thankful to all the families for bringing their beautiful daughters to the meeting and traveling several hours to attend. It was a great way for Jessica
to meet and get to know the other girls and provide support to each other's families. Looking forward to our next meeting!

Thanks again for attending and sharing in our 2nd Massachusetts Area Trisomy X Support Group! We will keep "Taking It To The MaxXX!”

Sincerely,

Joanne Burke
(Jessica age 12)
  
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