|Gwen M. – updated October 2019
Gwen turned 13 February 2019 & just started her 7th grade schoolyear. During her early years we never expected she would celebrate this birthday, nor did we have any idea what a full & amazing life she would live. She’s a ray of sunshine every single day. Gwen doesn’t appear to feel anger or hate, which makes her life truly amazing. To her, everyone is good & everything is sunny (except for blood draws & spiders.)
Gwen became very ill at 2 days old & was admitted to Nationwide Children’s Hospital NICU. She was placed on a ventilator and received peritoneal dialysis for a couple of days until she came out of her coma & was breathing on her own. On her 3rd day she was diagnosed with PA. At age 1 she stopped eating by mouth & since then she’s been 100% by a feeding tube because she refuses to eat. Despite that setback, she continues to grow & thrive. Last year, during a visit to NIH, she was officially diagnosed with a mild form of autism.
Gwen is a huge fan or talking, singing, dancing, & playing with her dolls. She loves beach vacations & trips to Disney World; her favorite ride is Hollywood Tower of Terror. In 2015 she joined the local Special Olympics swim team & is now on their gymnastics team as well. Until August of this year, Gwen had nursing care Monday-Friday. This schoolyear we made the tough decision to eliminate her in-school nursing care. It’s been a big transition but she’s handled it very well so far. She rides the bus to school on her own, transfers classrooms, goes to the nurses office for lunch (tube feedings), & rides the bus home where her brother Robbie (16) greets her. Until I’m home from work, she does homework & reads. Right now she’s really into Frozen chapter books.
Speaking of Frozen, this past spring, Gwen begged to audition for Frozen Jr.,a musical for kids 13 & under. She went into the audition room on her own (dressed as Anna), sang “Do You Want To Build A Snowman”, read lines with the casting team, & landed a small part as Middle Elsa! It was a dream come true for her. After 3 months of practices, she made her stage debut in June. She had 7 costume changes, 3 dance numbers, several lines, & even a little solo. It was truly amazing.
Gwen struggles to make friends her age, which is tough with her being in middle school, but it doesn’t seem to bother her. She’s mostly drawn to befriending preteen girls & avoids talking to boys. While she’s missing out on many of the social things that typical middle school kids do, she’s constantly finding new ways to fill those gaps. Her journey so far has been one of a kind & full of happiness. Is there anything better than that?
For more on Gwen’s story, visit GwenForACure.com
updated May 2015
|My beautiful girl just turned 9 years old this year and it seems nothing short of a miracle. At 2 days of age, Gwen became catastrophically ill, her body temperature dropped below 90 degrees, ammonia level exceeded 1,500 umol/L and she stopped breathing. She was placed on a ventilator and received peritoneal dialysis for a couple of days until she came out of her coma and was breathing on her own. On her 3rd day she was diagnosed Propionic Acidemia and her future was very uncertain. During Gwen’s first 3 years of life she spent as much time in the hospital as she did at home. Although she’s been admitted more than 50 times, she’s undoubtedly one of the happiest people on Earth. At age 1 she stopped eating by mouth, and since then she’s been fed 100% by a feeding tube because she refuses to eat anything. For many years she wore a backpack to carry her feeding pump, but she is now able to tolerate her formula through small bolus feedings and has a nurse who cares for her during the day.Gwen knows she’s very cute and she plays that to her advantage. What she does not yet know is that she’s very brave, has an endless capacity to forgive, an amazing will to live, and a beautiful spirit from God that has touched the lives of hundreds. She talks non-stop, sings the entire time we’re in the car, jumps off of anything she can climb on, loves to dance, play with her American Girl dolls and spend time with her brother and friends. She’s in second grade and receives special education services for PT, OT, math and reading. She’s also in Brownies and on the Special Olympics swim team! She is a miracle, a daily blessing, and a ray of sunshine in any room. I am grateful for every day I have with her and so proud to be her mom.
Gwendolyn Grace M. was born at 3:33 p.m. on February 3, 2006. She will soon be only 5 months old, but has already brought a lot of drama to our lives! She was diagnosed at 3 days of age with Propionic Acidemia. At 2 days of life we found ourselves at Columbus Children’s Hospital emergency room only hours after being discharged from the hospital of her birth. We were quickly transferred to the NICU, where we spent the next 2 weeks. That first night at Children’s, her ammonia level reached over 1,500 & she had stopped breathing. The fantastic medical staff acted very quickly. Gwen was intubated & put on dialysis. We nearly lost her a couple of times during that stay, but she pulled through. She ended up having another episode less than 2 weeks after being discharged. Once again, she pulled through magnificently. We have quickly learned the fragile nature of good health, the strength of a family, along with the amazing power of prayer. My baby girl is nearly 4 months old & seems to be beating all the odds. Despite her rough beginning, she is meeting all her early milestones. Gwen has an awesome fun club, including her brother, parents, grandparents, aunts, uncles, cousins, doctors, nurses, teachers, & friends. We are so grateful for their love & support. Check out our new web-site with even more pictures – Click Here.
Gwen’s 1st B-day!!!!