Sofia Martinez was just 9 years old when she lost her vision. After months of tests and blood draws she was diagnosed June 2011 with JNCL, Batten Disease. The genetic disorder is fatal and has a cruel progression causing blindness, seizures, muscle atrophy and death usually in early- mid twenties.
Sofia hasn’t let her lack of vision and medical challenges stop her from providing happiness to others. Sofia has always liked to dress up. Her mom Rene remembers many trips to the grocery store with Sofia dressed up as Pocahontas, Belle, or some other Disney Princess. As Sofia got older she became interested in pageants. Her love of sparkly things and her desire to talk in a microphone seemed like pageants were a perfect fit. However after exhaustive internet searches Sofia and her mom didn’t find a pageant that fit Sofia's needs. Finally Sofia simply asked her mom- “why don’t we make a pageant here mom?” And that is how the Miss Shining Star Pageant of Washington began. Having just completed its 4th event, the pageant draws uniquely abled girls from all over the state to participate! In 2018 43 girls ages kinder- 30 we able to shine on stage.
Filling a need. From 16 participants it’s first year to 43 in 2018. Sofia's idea for the pageant speaks to others. The girls come on stage in theme wear and introduce themselves. They then change and come back onstage in formalwear to answer an on stage question. There are no rehearsals for this one day event. Sofia is the brains behind the theme, awards, and details. The pageant is now a 501c3 and Sofia has a team of volunteers behind her making the day special for girls and their families. For the 2016 pageant Sofia wanted to add a community service award. She had been taken by lifeflight to a distant hospital and once released had no clothing to wear home. She asked pageant participants to collect new pajamas to be donated to hospitals. In 2016 about 600 pjs were collected. In 2018 over 1200 pajamas were donated!
In 2015 Sofia traveled to California to participate in the Miss Amazing Pageant program and attended nationals in 2015&2016. Washington doesn’t have the program but it is a wonderful pageant for girls with special needs.
Thanks so much for posting this project! Making sure disabled people have access to places they can celebrate their fabulosity and beauty is so important. What's been the most rewarding thing about this work for you?
Please let us know how we can support you here. Are you hoping to apply for a mini-grant, or are you looking for online community or a mentor? Or all of the above? :) Happy to help however we can!