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Frankie Says Fight Rett.org, Inc. is Frankie's legacy. We created this non-profit in our daughter's name in 2014 as our way to give back to our Rett community because we understand the difficulties, struggles, and extreme expense associated with raising an individual/s with significant needs. This is not a site to raise money for Frankie. If you would like to help Frankie and our family, we have other ways of doing that and you're more than welcome to email or call for that information. However, Frankie Says Fight Rett.org, Inc. is a 501(c)3 Tax Exempt Organization. Tax ID 46-5684253 created in Frankie's name to help raise awareness and help others in our Rett community.
Frankie's Legacy
Frankie Says Fight Rett.org, Inc. is Frankie's legacy. We created this non-profit in our daughter's name in 2014 as a way to give back to our Rett community because we understand the difficulties, struggles, and extreme expenses associated with raising an individual/s with significant needs. This is not a site to raise money for Frankie. If you would like to help Frankie and our family, we have other ways of doing that and you're more than welcome to email or call for that information. However, Frankie Says Fight Rett.org, Inc. is a 501(c)3 Tax Exempt Organization. Tax ID 46-5684253 created in Frankie's name to help raise awareness and help others in our Rett community.
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Frankie's story is not a familiar one and thus needs to be told. After a relatively normal pregnancy, Frankie Gray Gilman was born on August 13, 2009. She was a bright-eyed, typically developing baby. That is until somewhere around the time she was six months old.
We noticed her left eye was turning in like a cross-eye fashion. This condition is called Esotropia. She also showed signs of Hypotonia or low tone. She was not getting stronger and her movements were slightly shaky. The doctors call it Ataxia. Even so, we were not too concerned because the doctors did not appear to be concerned.
We, as well as several in our family, believed the delay was due to her eyes. Armed with this belief we consulted a Pediatric Eye Surgeon. She had corrective eye surgery in October of 2010 when she was fourteen months old. Still, we continued to see changes and inconsistencies in her developmental growth. Some were quite subtle, some were gradual, and others seem to have happened overnight.
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​By the time she was two and a half years old, we could not deny that something more serious was going on. Her movements became more Parkinson-like. Having started to develop a vocabulary early on, she just lost her words and her desire to even attempt to speak. She began to have seizure-like episodes and it took all she had just to sit on the couch. Even with these changes, her MRIs came back normal. However, her EEGs showed abnormalities. As time progressed, her Doctor's, Specialists and Therapists seemed to become more and more perplexed.
It was about this time that I had learned about Rett Syndrome in a Human Development class I was taking. When we suggested they run this blood test, all of our support team said 'that's not what she has'. For two more years, we went down other paths in search of a diagnosis.
We, as well as several in our family, believed the delay was due to her eyes. Armed with this belief we consulted a Pediatric Eye Surgeon. She had corrective eye surgery in October of 2010 when she was fourteen months old. Still, we continued to see changes and inconsistencies in her developmental growth. Some were quite subtle, some were gradual, and others seem to have happened overnight.
By the time she was two and a half years old, we could not deny that something more serious was going on. Her movements became more Parkinson-like. Having started to develop a vocabulary early on, she just lost her words and her desire to even attempt to speak. She began to have seizure-like episodes and it took all she had just to sit on the couch. Even with these changes, her MRIs came back normal. However, her EEGs showed abnormalities. As time progressed, her Doctor's, Specialists and Therapists seemed to become more and more perplexed.
We have found countless blessings and lessons along this bumpy road, with many more to come. Frankie has given us and all whose hearts she touches the amazing gift to practice patience, tolerance, courage, compassion, strength, perseverance, intention, beauty, and most importantly; unconditional love every day. Look closely at that beautiful face; those enchanting gray eyes that speak volumes and you will see beyond Rett Syndrome to a free-spirited silent angel – our girl, Frankie.