Suzi Beall Shaw
If you know anyone in our family, you have certainly heard of 22Q! But before Molly, none of us had. Jim Bob & I have adopted 2 beautiful daughters- Samantha in 2008 & Molly in 2012. Molly was diagnosed with a critical congenital heart defect called Tetralogy of Fallot at 29 weeks gestation & with 22Q11.2 Deletion Syndrome at 34 weeks, 2 weeks before she arrived. I instantly became an activist, burying myself in research & joining every support group I could find. We had custody of her from the moment she was born & it was during her 6 weeks in the NICU that I began to fully understand the lack of knowledge in the medical community regarding this complex condition called 22q11.2 deletion syndrome. Thankfully, several 22Q parents from Texas and across the world reached out to me in the weeks before & after Molly's birth. It truly changed my life! I knew I had to pay it forward many times over. So by the time Molly was 9 months old I had joined the board of 22Q Texas, a local non-profit. By the time she was 2, I was serving as VP. What started as a quest for knowledge & support inadvertently turned into a ministry of sorts. God has enriched my life with this journey. I have met so many amazing people on their own journeys all over the world. They have truly become like family. We share, vent, laugh, cry and pray together. It is rewarding to meet newly diagnosed parents then help connect them with support groups & resources that best suit their needs, just like my mentors did and continue to do for me! Want to learn more about 22Q? Start here: http://22qfamilyfoundation.org/what-is-22q/22q-faq
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