We received Turner’s diagnosis in June of 2019. He was 6 years old, and to say we were devastated at first would be an understatement. Heartbroken because we knew something was wrong that we couldn’t “fix”, but weirdly relieved because we finally had the answer to all the questions we had been asking for the last 2 years. Unfortunately, the answer to those questions brought on a whole new set of questions so we immediately joined the Foundation to find out as much as we could about Phelan-McDermid syndrome. Hours of research and conversations with many sweet souls traveling the same road as we are has allowed us to begin to come to grips with what PMS means for Turner and our family’s future.
For so long we wondered and worried about what it was we were facing, so when we finally had an answer the fire was lit inside that has ignited a passion to raise awareness of this rare genetic disorder for our son and everyone else that is affected in any way by PMS. From the very beginning we have always referred to anyone that has come into our life as a result of Turner’s PMS diagnosis as our “tribe.” So, you could say Turner’s Tribe was quickly born in July 2019. When we’re not fighting PMS, we own and operate a small business that specializes in screen printing, embroidery, and promotional products so we are afforded a great opportunity to use all of those tools at our disposal to help raise awareness. October 22, 2019 marked the 2nd Annual Phelan-McDermid Syndrome Awareness Day, but was the first for us. We knew we had to do something to get involved and starting in our small town of Cairo, GA seemed like as good a place as any to kick things off. T-shirts were printed and sold (obviously), bracelets were made, donations rolled in, and through it all that first year we were able to donate $5,000 to PMSF from what has affectionately been dubbed “Turner’s Tribe Day” locally. You couldn’t get very far around here on October 22nd without running into a green “Turner’s Tribe” t-shirt, or seeing a green bow on a mailbox, or a business lit up green overnight. We were truly humbled by the support of our little community.
As we all know, 2020 was…challenging, to put it mildly. But we weren’t going to let the challenges it brought put a damper on all that we had planned and the goals we’d set for October 22, 2020. Once again, our community rallied behind us from the school to local restaurants, to even our city government proclaiming October 22, 2020 as Phelan-McDermid Syndrome Awareness Day. Once everything was totaled we had sold over 600 t-shirts and from those proceeds and many other generous contributions we were able to donate $8,000 to the foundation on behalf of Turner’s Tribe in 2020.
We are excited about the prospects of PMS Awareness Day 2021 and hope this year’s event will be bigger and better than last year!