THE LIONS CHANGED MY LIFE Keeping the Faith Expecting their first child, Bridget and Mike Wildschuetz were full of excitement and anticipation at the 19-week ultrasound. When the doctor discovered that the baby’s eyes had not developed—a condition called anophthalmia—they were heartbroken. Once the news sunk in, they had many questions but were having difficulty finding answers. That changed when they found out about the International Children's Anophthalmia Network’s (ICAN). They began to receive the guidance and support they needed. That became even more important when at 3 months old doctors determined that baby Faith’s anophthalmia was part of a rare genetic mutation called SOX2. The Wildschuetz’s knew that traveling from their home in St. Louis, Missouri, to an ICAN conference in Chicago last summer would be invaluable; a Lion friend recommended they turn to the Wildwood Area Lions for assistance. The Lions covered the cost for the Wildschuetz’s to attend the conference, and they’ve helped Faith become the thriving 4-year-old she is today. Q&A: Bridget Wildschuetz LION Magazine: What is the SOX2 mutation? Bridget Wildschuetz: It is a rare mutation—one in 250,000—that was identified in just the last 10 years, so there are a lot of unknowns. As a result of SOX2, Faith struggles with hearing loss, breathing difficulties, gastrointestinal and feeding issues, neurological issues and has global developmental delays. LM: How has ICAN helped you? BW: A genetic counselor with ICAN was the first person we talked to who finally understood what Faith’s condition was. She gave us insights, helped us with what to expect and put us in contact with other families dealing with the same challenges. ICAN has been an amazing resource through this journey. LM: How was the conference? BW: It was inspiring to spend the weekend with families and professionals who know life as we live it. We talked with other families about what’s working, how to overcome obstacles. There were great speakers on new research and coping strategies. Faith was evaluated by a team of specialists. We got some new ideas, have some next steps in place and feel rejuvenated! LM: How is Faith doing? BW:There have been many challenges, but she’s reached a point where she’s getting much more enjoyment out of life. Her first couple of years were basically building resiliency. She is smiling more and is more in tune with what’s around her. She loves music and horse therapy. Our goal for her is to be healthy and happy, and everything else is a bonus. LM: Did you enjoy meeting the Wildwood Area Lions? BW:We went to a meeting, and they were so eager to learn more about how to help find ways to give Faith the best life possible. It was clear they understood that we couldn’t miss the ICAN conference if we want to give Faith the best chance. And they got to see her beautiful smile! Learn more about ICAN at www.anophthalmia.org. Follow Faith’s journey at http://superbabyfaith.com. Lions: have you heard from a beneficiary or a recipient of your kindness, service or charity? Tell us about the feedback you receive from those whose lives you’ve changed for the better. Email a brief description of your correspondence to email@example.com. Please include “Thank You” in the subject line.
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