We promised that when we hit the $2500 mark, we will ALL shave our heads on camera...You donated so we are SHAVING OUR HEADS:
WHEN: JUNE 17, 2017
WHERE: GYPSY HILL PARK, STAUNTON VA (hopefully in the pavillion on the tastee freeze end)
TIME: 10:30 AM
YOU CAN STILL DONATE- EVERY DOLLAR PUTS US CLOSER TO A CURE
Why would we go to this extreme?
Quite simply, because we love a beautiful, amazing, strong and vivacious young woman with Rett Syndrome.
We are Angela and Tommy (Desiré's Mom and Bonus Dad), Brenda (Desiré's Ima (Bonus Mom)), Aly (Desiré's sister) and Corey (Desiré's God-Brother).
Desiré is 23 years old- she loves clothes, watching TV, shopping, boys, music (did I mention boys?), and socializing with her peers. Desiré is smart, funny, and sweet. She can be so loving one minute and then just a little bit devious the next. Desiré is incredibly forgiving and amazingly stubborn... and she has Rett Syndrome.
Rett Syndrome affects every part of life for Desiré...it affects her ability to walk, her ability to talk, her ability to eat, her ability to control her body...and sometimes it even affects her ability to breathe. People with Rett Syndrome understand everything that is said to them and are just as intelligent as their peers- Because of the Apraxia that Rett Syndrome causes, they are trapped inside bodies that they cannot control.
Desiré has had seizures since she was 5, and at one time was having over 100 seizures a day. Her seizures are under control now and we thank God for that every day. She has had over 16 major operations including; Scoliosis surgery to put titanium rods from her pelvis to her neck, Feeding tube surgery so we can be sure she gets the nutrition she needs, and a Vagus Nerve Stimulator implant to help control her seizures.
No matter what Rett Syndrome has thrown at Desiré she has always come out on top and smiling. She has the most amazing tenacity and positive outlook. She astounds us with her ability to keep smiling through painful operations, debilitating seizures and the frustration of being unable to communicate what she is thinking. She relies on us for her every need and is so forgiving when we don't get everything right.
She is the reason we are willing to go bald...she is our reason for everything. Research into a cure for Rett Syndrome is ongoing and very promising. A cure is possible!! In 2007, University of Edinburgh Professor Adrian Bird demonstrated the ability to reverse Rett Syndrome in a lab setting. This remarkable discovery proved that the Rett-like phenotype can be reversed even in late stages of the disease. There is now proof that Rett is a curable condition. But a significant investment in Rett research is needed to turn this promising result into treatments and a cure for girls and women with Rett.
The possibility for not just a cure but also reversal is very real. PLEASE HELP so that one day this debilitating disorder is just a memory
Donating through this website is simple, fast and totally secure. It is also the most efficient way to our fundraising efforts.
Thank you for your support -- and don't forget to forward this to anyone who you think might want to donate too!
Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation?of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.
Rett syndrome is confirmed with a simple blood test to identify the MECP2 mutation. However, since the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both.
Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.
Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.