I joined Girl Power 2 Cure after we learned of our daughter, Laura’s diagnosis of Rett Syndrome in March of 2007. Since then we have learned so much from her and we believe she was sent to us to teach us so much about love, patience, and life. Girl Power has given us a place to go to for help and be a part of an incredible journey.
Tina is a high school music teacher in Tucson, AZ. Her daughter is Laura.
I’ve been a nurse for 20 years and have worked in various settings (nursing home, hospitals, and even an orthodontist’s office) however the majority of my career was devoted to working as a home health nurse for a young woman named Kimberlee. When I met Kim I had never heard of Rett Syndrome. The information I did find was not encouraging and didn’t reflect the clearly intelligent and engaging girl I spent hours with each day. Although Kim was non-verbal we quickly bonded and developed a close friendship. Music was a huge part of our bond and we made it a point to have a dance party every day we spent together!
After 14 amazing yrs together Kim’s fight with Rett came to an end. Devastated by the loss of my best friend, I coped the only way I knew how: music and dancing. We set up an annual fundraiser in her memory (Swingin’ 4 Rett) and I knew I wanted to donate the proceeds to GP2C. I am so proud to share the things Kim taught me and see that she can still have such a positive impact on others. We have several Rett families who attend our annual event and I have had the privilege of working with and advocating for TiaMarie and her family. Additionally, I am a homeschooling mom of 2 awesome boys and my husband and I teach Swing & Salsa dancing thru our dance studio Spa City Swingers.
My name is Vanessa Covington. I am married to Phil and we have two boys and Martilee. We have lived in many places, but currently reside in the small town of Glenwood, IA. I am a stay at home mom who enjoys being creative, going “junking”, and running #untilshecan.
Hello my name is Jeannette Vega. I am the wife of Victor Vega and mom to Tiana who has Rett Syndrome and Aliyah. My professional background is in Zoo Animal Technology, Exotic and Domestic Animal Training and also am a certified Canine Training and Behavioral Specialist. However, when Tiana was diagnosed in 2015 I decided I would put that career aside to learn all I can about Rett Syndrome and quite honestly to soak in the reality of our new life.
Within a month of diagnosis, we found out about the Disney Princess 1/2 Marathon and learned the GP2C had a team of runners! My husband signed up immediately having never done a marathon prior and dressed up as Ariel in honor of Tiana and her love for water, and as a symbol of voiceless beauty and “legless” strength. During this time we met so many Rett families and what a sign of HOPE that all is going to be ok. That we are not alone. It was such a blessing to meet everyone and feel an instant connection. I am so grateful to GP2C for providing events where we can all gather together and share life’s trials and joys. I don’t think I would be in such a great emotional state if it weren’t for the support GP2C provides to Rett Syndrome families and the support that the families provide for each other.
I am here to pay it forward. To help support such a great organization and to reach out to other families. I am here to help raise funds, bring awareness and push the medical industry all the way to a Cure!
“Sometimes you have to grow where you are planted.”
Those are the words my mother said to me not long after we received Evie’s diagnosis of Rett Syndrome. At the time, those words stung because I didn’t want to be planted here. It was scary and unknown. I just wanted to stay in my bitter shell. Then I decided I wasn’t going to live like that anymore. I contacted Ingrid and asked how I could help. A short drive and a can of paint later and I found my purpose. If I was going to be planted in Rett Syndrome, then I was going to be a bright flower in an otherwise cloudy world. We don’t always get to pick the soil we are planted in, but we do get to choose how and what we grow. Everyday I choose to grow with hope; knowing that our girls don’t fit into a “one size fits all” box. They are smart. They are funny. They are patient. They are so strong and brave. They are capable of so much more than people know and every day Evie surprises me with what she can do.
My hope has flourished since meeting Ingrid and other families from all over the country. They have been a source of encouragement and understanding and without them, I would be a bit lost. They inspired me to run a half marathon with them in 2015. They are helping me grow as a mother and an individual. I am proud to be a part of Girl Power 2 Cure and feel so honored to be a member of the Mother’s Advisory Board. I am looking forward to watching our hope spread and helping others just like these families have helped me.
– Stay at home mom/wife, mother of Evelyn, champion of hope
My name is Karla Perez from Donna, TX (Down by the Border) I am bilingual English and Spanish. I’m currently a stay at home Mom of three Diego, Luz Viviana and Samantha. Being a stay at home mom for the past three years has allowed me to get more involved in raising awareness and funds for Rett Syndrome research. I enjoy helping newly diagnosed families in the USA as well as Mexico. I am honored to be part of the Power Team and look forward to working with many families.
Hello my name is Maria Hernandez and this my Goddaughter/Niece Danai Gutiérrez. We are from Texas. I love raising awareness every chance I get for her and for all of our girls. Danai’s favorite therapy is horse therapy at Unbridled. I dream of the day we have a cure for our girls.
My name is Charity Proffitt and I live in Lakeland Florida. I’ve worked for the State of Florida for the past 8 years. I joined GP2C 7 years ago during the Disney Princess Half Marathon Weekend. I was never a runner, and never ran, but I signed up for the half marathon for Skylar and all of her Rett sisters and brothers. That weekend was amazing and truly life changing. From the support that GP2C gives, the friends that have become family, to the love and devotion everyone has for one another made me feel like I had find my “home” with Rett Syndrome.
I was blessed to be a mom to Skylar for 16 years, but after 16 years she lost her battle to Rett syndrome. Skylar truly was my teacher in life. She taught me what unconditional love is, what true heroes are—The list could go on and on. Truly lost and heartbroken by the loss of my daughter, and my best friend, but I know that I cannot give up. I have to keep strong like Skylar, I have to live every day to the best that I can. I am keeping her legacy going and proud to continue to share the things Skylar taught me—Her love of life, her joy and spunk. I know that she is still having such a positive impact on others.
We are Stephan and Mari Boczar, parents of beautiful Lilliana and handsome Jonathan. We are a military family that was stationed overseas in the UK for 6 years and just recently relocated back to northwest Florida. It was a long road of trying to get a correct diagnosis for our One of Kind girl. After seeing many specialists through health care in a foreign country, she was diagnosed with Williams Syndrome at 20 months of age, autism at 3 and then finally Rett at 3.5 years in 2017. Once we wrapped our heads around the fact that our world will never be the same, we began to look for support.
We joined Girl Power 2 Cure right after the diagnosis and fundraising along with awareness quickly became one of our main focuses. Additionally, we supported 2 additional nonprofits in the UK. Finally, we started a page on Facebook called Living for Lilliana which is devoted to awareness of Rett and other special gifted persons. We love all of the support, information, and hope GP2C gives the families that are afflicted with Rett. We are honored to be part of the support team and hope to make a difference in other families just like us. Mari and a team of runners will be running the Disney Princess half marathon for the first time in February. Our family can’t wait to meet everyone and continue to find new ways to support the Rett community.
Jennifer is a full-time music teacher, wife to Brian, and a mother to two beautiful children, Brianna and Alexander (AJ) My son, yes you heard right, my son AJ has Rett syndrome. We love traveling and spending time together. I’m so excited to have this opportunity to help raise awareness and be a voice for our boys who are affected by Rett syndrome.