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Mary Ann C.

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SADS (Sudden Arrhythmia Death Syndromes) Foundation
June 29, 2012

I am writing to you as an advocate for – and perhaps the #1 greatest fan of – the SADS Foundation. This organization has truly impacted my life, and I cannot imagine how I would have coped with the trauma that I have over the last six months without them.
In June 2011, my then 13-month old son, Lee, was diagnosed with Long QT 8 / Timothy Syndrome. This diagnosis is one of the more rare conditions that the SADS Foundation provides support and education for – and was obviously extraordinarily devastating news for us to receive. The prognosis for Lee’s condition is not good, but already with the constant love and support from the SADS Foundation, we are doing everything possible to ensure a happy and healthy life for this amazing little boy.
The day I found out about my son’s diagnosis was a day I will never forget. Feeling as if I just had the air knocked out of me, I knew our lives had just changed in more ways than I could comprehend. I felt incredibly alone, and had no earthly idea how my husband or I would be able to handle this news. It was only after talking to the SADS Foundation that I finally felt like we weren’t alone, and that there really are people out there who understand what we were going through. Alice Lara and Laura Wall were like guiding angels – calming my fears and walking me through what Lee’s diagnosis may likely mean for our family. I could not have imagined going through those first days – and the last many months – without them. They have gone above and beyond to provide me – and Lee – with resources, contacts for some of the world’s most well respected professionals in the field, and networks of other families and parents.
I have volunteered with, and donated to countless non-profit organizations and foundations in my life, and I truly must to say the SADS Foundation is one of the most professional groups I’ve ever come across. Not only are they professional, but they also take the time to get to know each and every family and do their very best to get them the support and attention they need.
In the short time that we’ve been dealing with our son’s diagnosis, my family (including extended family and friends) has helped raise over $5,000 for the SADS Foundation. I feel 100% confident that this money will continue to help the SADS Foundation support other families like mine and also help bring awareness to the frightening Sudden Arrthymia Death Syndrome. I know for certain that I am one of thousands of people who will make the same statements of appreciation for this incredible organization. All the families I know who have been affected by a SADS condition have made a commitment to support the SADS Foundation in any way possible, and I can confidently say that I will be a supporter – and a fan – for life.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served