Welcome to Lily's Personal Page
Thank you for visiting Lily fundraising page! And thanks to all of our wonderful family and friends for your generous support every year. You help make us one of the top 10 fundraising Strollathon teams in the nation every year. We are honored to have your support!
We are going to try and do it again this year for the 10th Annual Florida Strollathon, Rettsyndrome.org’s signature fundraising and awareness event to raise money for essential research of effective treatments and to find a cure for Rett syndrome. This year’s event will be held Saturday, November 2nd, 2019, at the Space Coast Field of Dreams in West Melbourne, FL.
Imagine having a beautiful little girl who develops normally for almost 2 years... talking, playing with toys & books, finger-feeding herself, etc. only to regress and lose all her verbal, social and fine motor skills in a matter of months. All your hopes & dreams of having a normal, healthy daughter are suddenly dashed as you are told she has Rett Syndrome.
Rett Syndrome is a genetic neurological disorder that is not normally inherited. It is essentially a new mutation each time it occurs and becomes apparent after 6-18 months of early normal development. Every child with Rett Syndrome is different and has a unique combination of issues, but the resulting regression leads to lifelong impairments, including lost speech and purposeful use of their hands, seizures, scoliosis, breathing problems, sleep disturbances, anxiety, feeding tubes, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett Syndrome require maximum assistance with basic daily activities for the rest of their lives.
Sadly, the above is one of the better outcomes that can be expected, as too many of our young girls and boys earn their wings to heaven each year. The past couple of years have been especially hard with so many lost, including the passing of one of our own beautiful, special girls from Florida, Skylar Proffitt (16).
Rett Syndrome affects primarily females (there are rare cases of males with Rett Syndrome), and its symptoms are devastating. Imagine the symptoms of autism, cerebral palsy, epilepsy and anxiety disorder affecting one child who cannot speak… this is Rett Syndrome!
But there is also great hope. With $49M invested to date in research to find a cure, 32 active research studies and several ongoing clinical trials, tremendous progress is being made. Rett Syndrome has been shown to be reversible in a lab setting with mice, and scientists have since been exploring many avenues to make this a reality for Lily and other girls and boys.
Our daughter Lily (soon years old) was diagnosed with Rett Syndrome when she was 2 years old. We had just brought her from China and moved to Florida a year earlier. Most of our friends and support was in Georgia and we struggled when we were told our daughter would never talk or even have any expressive or receptive language; told that she had a high probablity of passing before she turned 10. Those were very difficult times for us but having an organization like Rettsydrome.org really helped us get through that rough period by educating and supporting us, and by simply letting us know that we were not alone! Rettsyndrome.org is contributing to research scientists around the world that have made incredible progress--first, in finding the cause of Rett Syndrome, and hopefully soon in developing a cure.
We are certain that a cure will happen in Lily's lifetime, but not without the generous support of people like you. You can save her and thousands of other girls and boys around the world.
Time is of the essence. Please donate today to help Lily and the many other girls and boys living with this devastating disorder. No amount is too small. Your support will mean so much to us. We appreciate your time, consideration and help as we fight for a cure for Rett syndrome. Your help is our hope! Thank You!
*Questions/problems donating, please call Henry at any time: 561-889-5610
Donations for Lily Perez
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