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Emma is a beautiful 3-year-old girl who loves her family very much. She has an amazing big sister named Bailie who makes her laugh almost all day. Emma loves horses, baby dolls and water, so bath time is a favorite. Before every nap and bedtime, she has to say goodnight and get a hug and kiss from everyone in the family (her pets, Snoopy and Lola included).
Emma was born with Beckwith-Wiedemann Syndrome (BWS), a rare genetic disorder. Despite her mom’s healthy pregnancy having no real concerns, Emma was born with low tone in her core and face, an umbilical hernia, a stork bite birthmark, muscle spasticity, jaundice and more. She lost an entire pound in her first five days as feeding was difficult due to also having hypoglycemia and macroglossia.
In her first three months Emma had an appointment every day: therapy for feeding, occupational therapy, and physical therapy. Her family was overwhelmed through this time, but they knew not all hope was lost.
They joined an online support group for BWS, where they learned more and met a supportive group of people. They also recognized the risks associated with the link between BWS and childhood cancer. Kids with BWS are up to 600 times more likely to develop certain types of cancer than other kids.
When Emma was diagnosed, her mom, Crystal, felt like she was in a cocoon of darkness, but God helped her family find light again. She seeks peace in the Bible verse that is most meaningful to her family: Jeremiah 29:11, “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Crystal finds it especially meaningful that the symbol for BWS is a butterfly - a sign of hope for better things to come.
Following Emma’s screening protocols, her family knows she is getting the best care she can. Emma has AFP blood draws every six weeks, and complete abdominal ultrasounds, plus urine VMAs every three months. Still, despite the protocols in place, kids with BWS are diagnosed with cancer often in their community.
That is why Emma and her family help Alex’s Lemonade Stand Foundation raise funds and awareness: for those battling cancer and those who will in the future. Crystal wants these kids and their families to know they are never alone.
Information provided by Crystal Boelk, Emma’s mom
Updated June 2020
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