Connective Issues Fall 2018

QUALITY OF LIFE

SUPPORTING OUR KIDS IN THE HOSPITAL Sydney Lerman Pediatric Hospitality Program

“I feel so alone as no one in my circle knows what we are dealing with. I have had a few chats with Marfan moms who understand, and that really helps,” said Tammy. If your child is facing surgery, please let the Foundation know by going to the Sydney Lerman Pediatric Hospitality Program on our website and completing the questionnaire. We are happy to send a basket for you and your child to ease your hospital stay.

KELLY, WITH HER BROTHER, TRAVIS, FELT WELL-SUPPORTED AFTER HER SURGERY THANKS TO THE SYDNEY LERMAN PEDIATRIC HOSPITALITY PROGRAM.

When nine-year-old Kelly of Central Islip, NY, had scoliosis surgery this summer, she didn’t just have her family and friends for support. She also had The Marfan Foundation community cheering her on. Through the Sydney Lerman Pediatric Hospitality Program, the Foundation sent Kelly a basket of goodies that included snacks and games that not only lifted her spirits, but also let her mom, Tammy Shaffer, feel the warmth of our community. “The Marfan Foundation is amazing with all the love and support they give and all the goodies they have sent to Kelly,” said Tammy. “The Foundation has been an amazing support system for us for the past six years, since Kelly was diagnosed with Marfan syndrome.” Tammy feels a special bond with Barbara Lerman, whose daughters, Sydney, who has Marfan, and Carly, started the Sydney Lerman Pediatric Hospitality Program, which provides gift baskets to children with Marfan and related conditions who are in the hospital. The baskets also include gifts for other family members because the Lermans know from their own experiences that the hospitalization impacts the whole family.

4 Marfan.org