The tone in operating room quickly switched from light and airy to hushed after the birth of the Hott’s second daughter. The Hotts were soon told that their daughter had a large birthmark, a Giant Congenital Melanocytic Nevus that occurs approximately once in every 500,000 births. When Rob was allowed to see his daughter, he was surprised to see that the birthmark covered most of their daughter's back and wrapped to the front of her body around her neck and arms. In her first hours of life, Addie was also diagnosed with a rare neurological condition: Neurocutaneous Melanosis. When asked what hope looks like for their family, the Hotts share a perspective that is deeply rooted in personal faith, as well as an awareness of the realities their daughter will face moving forward.
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An in utero stroke weakened the left side of Emeril's body, causing cerebral palsy. She and her parents share about how they’ve adapted to life along their journey. While they have faced countless frustrations, challenges, and setbacks, they have also found joy in their story and been able to face the seasons with hope and faith.
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In 2016, Miles Glee was nine years old, and his family was in the middle of new and exciting transitions. What they didn’t expect was a diagnosis of leukemia that would send them through a range of tests and treatments. Here is their story of how they held onto hope in the midst of challenging circumstances.
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Jacqueline and Josh Johnston didn't think much of it when they were referred to a perinatologist early on in Jacqueline's third pregnancy. Assuming this must be a routine precaution, they were both unprepared for the news they received: their baby's first sonogram had shown a life-threatening cystic hygroma — a fluid-filled sac on the baby's neck.
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Two years ago we sat down with Caroline and John Carroll to speak to them about their journey with their daughter Claire. Claire was born with a heart defect and Down Syndrome, or Trisomy 21. At just two years old, when Caroline was only nine days postpartum with their third child, Claire was diagnosed with leukemia.
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Bailey Lackey had just begun Kindergarten when her parents and teacher noticed that something seemed wrong. The normally joyful little girl was beginning to struggle behaviorally: anger, frequent meltdowns, and tears accompanied other symptoms, like exhaustion, thirst, and constant trips to the bathroom throughout the night.Her mother, Jamie, worked locally at a hospital at the time and had just completed a course on diabetes.
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When Ben and Mary McMath’s son, Whit, was just three months old, his pediatrician noticed that he had nystagmus, or involuntary rapid eye movement. The doctor instructed his parents to take him to a specialist within the week. “That was my first indication that anything serious might be wrong,” Mary remembers.
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Last week we shared the story of Madeline Gaffney’s diagnosis with Chronic Myelogenous Leukemia through her parents’ eyes. This week, we have the privilege of sharing Madeline’s perspective with you.
Read More![Chronic Myelogenous Leukemia: Madeline’s Story of Hope [Part 1]](https://images.squarespace-cdn.com/content/v1/5d3a161fab57400001d7bc50/1566960793184-RSB4V2I93W16IA5SHVJW/Gaffney-2.jpg)
In January 2009, Madeline Gaffney was approaching her fourteenth birthday when she began to complain of tiredness and joint pain. As an active teen, who maintained straight A’s while heavily involved in dance and competitive cheerleading, this news wasn’t immediately worrying.
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