Catalina's father is running the Disney Princess 1/2 marathon to raise funding for Rett Syndrome Research

Catalina is an amazing young girl. She is fun, smart, patient, kind, loving, and is suffering from Rett Syndrome.

Rett Syndrome is a neurodevelopmental disorder primarily affecting girls and begins in early childhood. Often, the girls have a normal childhood development until the symptoms of Rett Syndrome first appear usually between 6-18 months of age. They go through a period of rapid regression and loss of basic skills including effective use of their hands, balance and ambulation, and loss of verbal communication. Rett Syndrome has a host of life-long physical and emotional challenges including the following (adapted from www.rsrt.org):

  • Loss of verbal speech and motor control
  • Functional hand use replaced by nonfunctional, compulsive hand movements
  • Disordered breathing
  • Severe digestive problems
  • Orthopedic abnormalities including scoliosis and fragile bones
  • Disrupted sleep patterns
  • Extreme anxiety
  • Seizures
  • Impaired cardiac and circulatory function
  • Parkinsonian tremor

Despite these significant health challenges, these girls are incredible and are loving and caring individuals with amazing abilities. Recent technology advances have created the opportunity for these girls to communicate through a computer by using their eyes and therefore better express their thoughts and needs. Through the use of this technology, we have a window into the minds of these children and have seen that they have age appropriate intellect. In addition, recent research suggests that the challenges of Rett Syndrome are fully reversible, and a great deal of energy has been invested in finding a cure for Rett Syndrome.

Your donation towards funding research dedicated to finding a cure, helps us get on step closer to allowing Catalina to lead a normal life and hopefully run this race for herself in the future.

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Organization Information

  • Name

  • Phone

    904-875-4810
  • Address

    2891 BREAKERS CT
    AMELIA ISLAND, FL 32034
  • EIN

    208011668

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