A Cure for Madeline

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Rett syndrome quietly walked into our lives in October of 2016. It took nine months and many different health care providers to piece all of Madeline’s unusual behaviors together to provide us with answers we were desperately seeking. Diagnosis day for us was June 21, 2017.

This awful neurological disorder takes over girls’ bodies and holds them prisoner. Most individuals with Rett syndrome are unable to use their hands, unable to communicate through oral language, and many are confined to a wheelchair. As a result of Rett Syndrome, the life we imagined for our little Madeline is no longer a possibility. Madeline will require maximum support for the rest of her life, unless a cure is found. Most girls with Rett go on to develop further life altering symptoms ranging from inability to walk, seizures, anxiety, gastrointestinal issues, scoliosis, breathing difficulties like apnea and hyperventilation, sleep issues, feeding difficulties with chewing and swallowing, and tremors.

When you meet Maddy, even if it is just for a few short minutes, it is obvious that she is a happy little girl. She may not look you in the eye immediately, but if you sit on the floor and speak in a soft and gentle way she warms right up and shows you her heart-melting smile. Maddy enjoys listening to Disney princess music, watching Frozen and Moana, swinging, playing in water or in her ball pit, going for stroller rides, and being around her siblings Emily & Jack as well as our dog George.

As you can imagine, we are devastated. However, we are not giving up hope. We are dedicated to raising awareness and funds for RSRT to support scientists and researchers in their relentless quest to find a cure. It is believed that Rett Syndrome may be the first curable neurological disorder. We have always believed in the thought that “It takes a village to raise a child.” We are very blessed to have such an amazing support system through our family and friends. We will for sure need our "village" to help us along this journey.

With love and hope,

Nick and Melissa

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.