Alyssa's Journey

Sisterly Love - Lily & Alyssa

I made a deliberate decision when I embarked on this journey, that my words, and the stories they told, would be only my own. I very rarely use first names, so far only my husband and my children, and I have no intention of using my last name. Certainly anyone who knows me (and most of you landed here from my Facebook page) will immediately identify people or initials or events; that is intentional as well. If my recollections bring a smile to your face, then I'm winking at you to share that moment with me. In the days and months ahead, these posts will tell most of my tales, comedy and tragedy, and everything in between. Today, with the permission of a remarkable friend, I'm going to share someone else's story. Today I'll tell you about Alyssa's Journey.

Alyssa is a typical, happy 6-year-old kid with one exception. She was born with a rare Jewish genetic disease called Glycogen Storage Disease Type 1a*, one which requires lifelong management.  Alyssa relies on her parent’s round-the-clock tube feedings every 90 minutes. GSD Type 1a is Alyssa's illness, but for this family, it’s woven deep in the fabric of their lives. Imagine, just for a minute, your life in 90-minute increments, 24 hours a day, every day.  Add to that a parents’ promise to give your children (in this case, 2 beautiful daughters, one afflicted with GSD) a normal, go to school, play date, Disney birthday party kind of childhood. Alyssa's parents refuse to let this disease put boundaries on their family; they adapt so the girls don't have to. I'm writing this at 2:25 am (couldn't stop thinking about it, got out of bed) and I guarantee you that before I make it back to bed, Alyssa's mom will have been up and back to bed more than once. She will do this all night long, every 90 minutes. Let me also clarify (for those of you who don’t know this special mom); if she wanted to have help, she could. Let me also tell you that tomorrow morning I'll be cranky and tired; Alyssa’s mom will get 2 little girls dressed (in possibly matching pink outfits - note:I wrote this before I saw the photo), in the car and out the door for their first day of school, and all of them will be smiling. Mom will be close by all day; not in the classroom, (because in there Alyssa is like all the other 6-year-olds). After school will be more activities or a visit to the JCC on the way home. Alyssa and I are bonding over a puzzle game on my iPad, last week I got a hug and I'm pretty sure we're good friends now (and I don’t have a lot of experience with little girls).

This schedule will continue, every 90 minutes, every single day, until Alyssa and her family find a cure for GSD 1a.  This routine would test the best of us, but Alyssa is a princess (and a big fan of Ariel) who smiles all day (I'm sure she has her moments, all princesses do) and her parents see only the joy their girls bring to their lives and not their personal struggle (I'm sure they have their moments too). They fight not just for Alyssa, but also for all the families who fight this battle with them.  Gayle and Steven, Alyssa’s parents, established Alyssa’s Angel Fund to provide financial assistance to OTHER GSD families worldwide who would otherwise be unable to receive the life-saving specialized medical care by Dr. David Weinstein and his team at the University of Florida in Gainesville.  This University of Florida practice, handles more GSD cases than any other in the world. Dr. Weinstein is at the forefront of both treatment and Gene therapy research. The answers are within reach and Alyssa’s family (and countless others) will not "rest" until a cure is found.

Here's where you and I come in. This Sunday, September 4th, the Mandell JCC’s Family Room Parenting Center and the PJ Library** host the 3rd Annual Big Wheel Derby to support Alyssa's Angel Fund at 9:30 a.m.(rain or shine) at The Mandell JCC. Bring your family, your Big Wheel, your trikes or bikes and cruise around the Derby racetrack; or just come for the smiles, no wheels or kids needed. Special guests Brad Drazen and Yvonne Nava of NBC Connecticut (I have my first cup of coffee with Brad before Matt Lauer arrives on screen at 7 a.m.) will host activities including crafts, face-painting, a bounce house, lemonade and snack stand and a birthday party for The PJ Library. If you live nearby (details and address below) don't miss it. If you know people who live nearby, tell them not to miss it. If neither applies, use the power of Facebook or twitter or whatever you use to connect and share this post (which I’ve never before asked you to do), because someone you know may know someone else.... and so on.

I'm going to repost this blog entry every 90 minutes, at every interval I'll be thinking about Alyssa. I hope you will too.

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Click on the links below to learn more about the Big Wheel Derby, The University of Florida Glycogen Storage Disease Program and to donate directly to Alyssa's Angel Fund.

Big Wheel Derby  - Registration fees for the event are $18 per family and payable to the Mandell JCC. Donations of all amounts, payable to the Alyssa’s Angel Fund, are welcome. For more information about the Mandell JCC Big Wheel Derby, or to registration, call 860-236-4571, or visit www.mandelljcc.org. To learn more about Alyssa’s Angel Fund, contact Jane Pasternak, 860-231-6342, jpasternak@mandelljcc.org.

If you are unable to attend but would like to make a donation to help GSD families, please make checks payable to:

"Alyssa's Angel Fund"

C/O Mandell JCC

Jane Pasternak

335 Bloomfield Avenue

West Hartford, CT 06117

The University of Florida Glycogen Storage Disease Program - http://www.gsd.peds.ufl.edu/

Alyssa's Angel Fund - http://bit.ly/opZE5x

*Glycogen Storage Disease Type 1a (glucose-6-phosphatase deficiency, von Gierkes disease,) is a rare genetic metabolic disorder centered in the liver. In children afflicted with GSD1a, a specific enzyme that breaks down certain carbohydrates, including glycogen (a stored form of sugar,) is either missing or not functioning properly.

** A program of The Harold Grinspoon Foundation that provides free Jewish books to families raising Jewish children. (PJ Library is funded locally by the Zachs Family and is a program of the Mandell JCC)