• Dear Gwendolyn, Please know we truly want to be the ones reading you this letter; however the emotions are way too high today. Writing about you and sharing your story to others has always been easy as [...]

  • Hi, My name is Gwen!  I have profound global developmental delays- this means my whole body is severely disabled.  I am blind, non-verbal, no functional use of my arms and legs, wheelchair bound, feeding tube dependent, and more.  This [...]

  • My daughter, Gwen, was five months old when she had a brain MRI that diagnosed her with severe neurological abnormalities.  Because her MRI findings were so rare, the medical team could not give us much information regarding her [...]

  • Today is National Women in Sports Day honoring Female Athletes.  Gwen’s mom played soccer from age 5 through college.  Naturally, it was a dream to watch your own child enjoy the same sport. Gwen’s path proved to be different [...]

  • Today our Rare Girl celebrates Rare Disease Day. 80% of Rare Diseases are genetically based and only 5% have treatments. The zebra is the official symbol of rare diseases because of it’s black and white stripes, which are [...]

  • In 2016, I was wondering around Gap looking for a baby shower present for a dear friend. I stumbled upon this onesie and immediately purchased it for myself as a means to tell my husband we were pregnant- [...]

  • In celebration of Father’s Day this weekend, we want to share a valuable lesson we learned last year. This sweet face is Warrior William- he unexpectedly gained his angel wings in August 2020. While we don’t know his [...]

  • Today, Ella (Gwen’s youngest sister) had her 4 month check up. I knew everything was ok but I still held my breath walking into the appointment.Rewind 6 years ago to Gwen’s 4 month checkup. Gwen had been crying 16-18 [...]

  • Gwen’s birthday week was nothing short of special but there is one extra special moment that must be shared. Gwen was able to check another item off her bucket list: GO ON HER FIRST DATE!! Grab the tissues, folks...this [...]

  • From Gwen: My Birthday Mission has been completed!! My goal: 10 Smile Bags Outcome: Over $8000 in donations and over 500 heartfelt cards allowed us to assemble 85 Smile Bags to be delivered to my fellow friends on [...]