It was one night In late April when we were presented with the possibility of a new diagnosis for Garrison (in addition to the PMG). This one was an even more rare genetic condition called Schinzel-Giedion Syndrome (SGS), but the prognosis we faced this time around was much more grim than the first. SGS was not only terminal, we would learn, but the majority of those diagnosed did not survive much past infancy. At that point, we knew we couldn't wait 1-4 months for the results of the genetic testing to come back; it was time to start writing and living our son's bucket list, and give him the best possible quality of life for however long he has left.
I'll be honest: we need your help. With Jeff, Garrison's primary caregiver and source of transportation, unable to work more than part-time hours; we are having a hard enough time meeting everyone's basic needs. Absent a miracle, therefore, we are unsure of how we will be able to give our sweet boy even a modest "farewell tour." With the Make-A-Wish type organizations unlikely to help because of age requirements, we have only our friends and loved ones to turn to. We know times are financially tough for a lot of you right now, but every dollar will get us that much closer to making Garrison's dreams come true.
With Love & Gratitude,
- Nathaniel Heidenheimer
- John Larson
Organizer and beneficiary
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