Madeline, “Maddy” was born 5 ½ weeks early with a rare, congenital heart defect known as Ebstein’s Anomaly. During transport to Ottawa, she stopped breathing and was clinically dead for 30 minutes, but thanks to the dedication of the transport team and God’s love, she is still with us today!
Originally diagnosed with Cerebral Palsy and developmental delays, testing has been done periodically throughout her life, but it wasn’t until recently that a final diagnosis was found. Maddy has an exceedingly rare genetic disorder. So rare in fact, it does not yet have a name and only a handful of people around the world have it. She is now in a study group to confirm and give a name to the unknown variant on the unknown gene. The symptoms of this genetic malformity include congenital heart defects, seizure disorder, global developmental delays, sensory processing disorder and intellectual delays.
Just this past fall, she also had open heart surgery to correct her congenital heart defect. Unfortunately, the first surgery at Sick Kid’s did not go as planned and she had to have a second emergency surgery at CHEO 10 days later. Maddy has now fully recovered from her surgeries and is thriving!
She is a great big sister to her 10-year-old brother Nate. She always wanted to be a big sister and have someone she that she could love and hug all the time. Unfortunately, her brother does not desire as many hugs as the “Huggy Monster” (as he calls her) is willing to give him!
Maddy currently attends the PLMP program at West Ferris Secondary School. She loves school and puts her all into everything she does! She also loves volunteering at Church, at the YMCA and other organizations throughout the city. One day Maddy hopes to be an assistant at a daycare because she loves little kids!
Please support Maddy and all of the kids helped by Rotary4Kids. Donations are welcome any time throughout the year. Please consider us.
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All donations receive an official tax receipt issued by The Rotary Club of North Bay Charitable Trust (donations made via Canada Helps receive a tax receipt direct from Canada Helps on our behalf).
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