Gwendolyn was born a beautiful 6 lb, 12 oz baby girl on September 23, 2014…perfect in every way! Her journey with health complications began at a couple weeks of age; however, it took until she was 5 months before an abnormal brain MRI provided us further information: atrophic cerebrum/brainstem, hypoplastic corpus collosum, and hypomelination. Following her brain MRI, an EEG was completed which demonstrated severe multifocal tonic seizures. The neurology team called Gwen’s case “rare and complex.” She was given the diagnosis of an undiagnosed neurological condition; impacting her vision, ability to walk, talk, and eat/drink by mouth.
Our sweet Gwen spent a lot of time at St. Louis Children’s Hospital during her first year of life. Shortly following Gwen’s 2nd birthday, a repeat brain MRI was completed in Nov 2016 demonstrating significant tissue loss across all areas of the brain. Sadly, Gwen’s diagnosis was switched to “progressive and degenerative.” At this time, Gwen was admitted to the Wings Program (an in-home pediatric palliative and hospice care program). Gwen, our true superhero, continues to fight her neurological disease with an undeniable strength and infectious joy! She may have a terminal diagnosis but she continues to celebrate life everyday.
A text (sent from Gwen’s daddy to mommy) read “Make a Difference Today for Someone who is Fighting for their Tomorrow” (quote from Jim Kelly) started this whole idea! This quote was a perfect reminder for the way we strived to care for Gwen: fighting her disease with love, endless snuggles, days filled with sunshine, blanket swings, and lots of prayer. Our goal was simple: MAKE GWEN SMILE EVERYDAY! We have experienced the fear, heartbreak, and sadness that comes with having a child with a terminal diagnosis; however, we have also learned some invaluable lessons from this journey: specifically, the importance of giving back! In 2018, Gwen’s 4th birthday celebration consisted of collecting monetary donations and homemade cards in lieu of birthday presents to create smile bags for her fellow friends on palliative and hospice care. This small collection grew into something more than we could have ever dreamed! Gwen collected approximately $7000 in donations allowing her to create 85 Smile Bags to be given during the month of September for an event we called “September Smiles.” Her Goal was Simple: Spread LOVE, Spread HOPE, Spread JOY, and Spread SMILES! We saw the positivity Gwen was spreading and we knew we must make this “one-time” event and create something bigger! So in 2019, “September Smiles” grew and became a non-profit called “Gwendolyn’s Gifts.” Gwendolyn’s Gifts has the same mission but plans to spread love, hope, joy, and smiles all 12 months of the year!