SARAH'S STORY
Dear family, friends, colleagues and business associates:
Some of you may remember that our oldest daughter, Sarah, was diagnosed with Long QT Syndrome when she was 4 1/2. Many have not heard of Long QT syndrome but most have heard of its stories: the 8 year old boy who dies in the middle of a soccer match, a 14 year old girl who collapses and dies after running a race at a track meet. Unfortunately, these children did not know that they had Long QT syndrome- a genetic predisposition to sudden cardiac death that is very often triggered by intense exercise. There is no cure but there is successful management with medication and avoidance of high risk activities like competitive sports once the family is made aware of the condition.
Our family was one of the lucky ones: we found out Sarah had Long QT Syndrome when she had a seizure in the middle of a swim lesson. Now, she takes her daily medication, avoids competitive sports and all of her caretakers have been trained in CPR and have access to an AED (Automated External Defibrillator). We are happy to share that Sarah has not had a single event since her diagnosis.
Now that Sarah is 9, she has come to understand her “specialness” and has decided to support a charity, SADS Foundation (Sudden Arrhythmia Death Syndromes) that promotes awareness of her condition so that other lives can be saved. SADS is hosting an event "Climb to Conquer SADS" where Sarah and our family are sponsoring a professional mountain climber to climb Mount Rainier, located in the State of Washington. Sarah will be decorating a flag that will be planted on top of the mountain. She hopes to raise $5,000 for SADS.
Funds raised for SADS will be used to:
- Provide Family Support to assist patients and their families in making informed medical decisions and living with the challenges of these conditions
- Increase General Awareness of Warning Signs to recognize and prevent heart rhythm abnormalities
- Educate Health Care Professionals in early diagnosis and treatment of heart rhythm abnormalities
- Be Advocates to increase arrhythmia research and improve the quality of life for patients and their families.
Please see the link below for more information about Climb and the SADS Foundation. Climb and the SADS Foundation Information
Please take a look on the left side of the screen at Sarah's version at 3 years old of the Itsey Bitsy Spider and Baa Baa Black Sheep- something she wanted to add to her fundraising page.
Thanks for reading our message and if you have any questions or would like a poster describing the most common symptoms of this heart condition to give to your children’s school nurse and coaches, please contact us at jmiller@mtrustlaw.com or (212) 601-2425.
Warm regards,
Jill, Michael, Dana, and Sarah Katz