Ara's Gitelman Gang 🧡
Brittany & Scott Nelson
Brittany & Scott Nelson
WHY WE WALK~ Ara
Our Awesome Ara was born a month early but needed no NICU time. Her tiny body grew but not like it should have. Despite our best efforts to help her gain weight, she was only 14.7 lbs at a year old. At 2, she was only 18.4 lbs. Thankfully, we had the most fantastic pediatrician who knew something was off and ran labs, which led us to an endocrinologist, then to a nephrologist.
Last year, we finally got the answer we were looking for but didn't want to hear- Ara has Gitelman Syndrome. A very rare kidney disorder (1 in 40,000) that causes an imbalance of potassium, magnesium and calcium. In Layman's terms, her body is in a constant state of dehydration, which untreated, puts stress on the heart and other organs. We were so lucky to get this diagnosis early in her life and start treatment as most people don't show signs until early adolescence or beyond. Although she will have it for her whole life, we are able to "easily" manage it with supplements through her "tubie" (g-tube) three times a day.
We have been embraced by the National Kidney Foundation community and have been so touched by the stories shared by those affected by kidney disease and impressed by the incredible staff and volunteers who dedicate their time to supporting this community. These funds are for them. Those who will need transplants, those who will give the selfless, life-saving donation of a kidney, for the education for early detection of kidney disease, advocacy at the federal level for the health care discrimination surrounding kidney disease, and beyond. We would be so grateful for donations in honor of Ara and/or for you to join Team Ara on October 12.
🧡 With love and gratitude, The Nelsons- Brittany, Scott, Ara & Emryn
Our Awesome Ara was born a month early but needed no NICU time. Her tiny body grew but not like it should have. Despite our best efforts to help her gain weight, she was only 14.7 lbs at a year old. At 2, she was only 18.4 lbs. Thankfully, we had the most fantastic pediatrician who knew something was off and ran labs, which led us to an endocrinologist, then to a nephrologist.
Last year, we finally got the answer we were looking for but didn't want to hear- Ara has Gitelman Syndrome. A very rare kidney disorder (1 in 40,000) that causes an imbalance of potassium, magnesium and calcium. In Layman's terms, her body is in a constant state of dehydration, which untreated, puts stress on the heart and other organs. We were so lucky to get this diagnosis early in her life and start treatment as most people don't show signs until early adolescence or beyond. Although she will have it for her whole life, we are able to "easily" manage it with supplements through her "tubie" (g-tube) three times a day.
We have been embraced by the National Kidney Foundation community and have been so touched by the stories shared by those affected by kidney disease and impressed by the incredible staff and volunteers who dedicate their time to supporting this community. These funds are for them. Those who will need transplants, those who will give the selfless, life-saving donation of a kidney, for the education for early detection of kidney disease, advocacy at the federal level for the health care discrimination surrounding kidney disease, and beyond. We would be so grateful for donations in honor of Ara and/or for you to join Team Ara on October 12.
🧡 With love and gratitude, The Nelsons- Brittany, Scott, Ara & Emryn
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