Colin’s Campaign

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It took some time to discover our son Colin’s diagnosis. There was little information on boys who live with Rett Syndrome, and we were probably still in disbelief, shocked by what had happened to our vibrant, engaged, sweet, little toddler. At 1 ½, Colin could climb a ladder on the playset and try to open a box of tic tacs. He loved to be cuddled and could be soothed by his family.

Then, over a period of about 6 months, he gradually stopped all activities and engagement. One simple step in physical therapy left him rigid and shaking with fear. He pulled on his ear and sat alone. There were no answers to explain his radical withdrawal from us. He was diagnosed with non-verbal Autism Spectrum Disorder by his third birthday.

The hallmark hand-wringing started and some of the doctors started mentioning Rett Syndrome, but we clung to the idea that “boys can’t have Rett Syndrome”. When Colin was 6 years old, we learned that he was one of the very few boys alive today with Rett Syndrome. There have been many changes in our son since those difficult days when he first regressed. Despite his struggles, Colin continues to display a fierce sense of independence, silly sense of humor, love of nature, an appreciation of music and most of all …an inherent sweetness.

In the years since he was first diagnosed, we have met or spoken with many people dedicated to finding a cure for Rett Syndrome. One particular person, Monica Coenraads of the Rett Syndrome Research Trust, explained that there are other boys living with Rett today. Thanks to social media, we have been able to connect with several of these families, many of whom urgently need a cure and reversal of symptoms.

We have all seen the recent advances in research, and we are confident that science is about to produce something wonderful for our children. The question is how long can our children wait? If you can donate to Rettgive, please consider it. No amount is too small. Every contribution helps speed the research. If you cannot donate at this time, please go to the most beautiful outdoor spot you can find and pray for these children. We know that Colin will appreciate all you can do for him and his “brothers and sisters” with Rett Syndrome. A cure is on the horizon.

Thank you,

Bill & Kate



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.


Supporters (15)

  1. Erin Hennicke 
    1 year ago
    $50
  2. Gerry & Korina Moran 
    1 year ago
    $100
  3. Iris Yurek 
    1 year ago
    $20
  4. Kathleen Ferdinandsen 
    1 year ago
    $100
  5. Kathleen Ferdinandsen 
    1 year ago
    $250
  6. Edrian Colina 
    1 year ago
    $5
  7. Kristin Schroeder 
    1 year ago
    $250
  8. Nancy Turnbach 
    1 year ago
    $500
  9. Rocco Fultz  
    1 year ago
    $100
  10. Amy Greer 
    1 year ago
    $100
  11. Susan Rice 
    1 year ago
    $100
  12. Alex Wright 
    1 year ago
    $100
  13. Michael Cahill 
    1 year ago
    $100
  14. Barbara Dakin 
    1 year ago
    $100
  15. carol beardsley 
    1 year ago
    $100

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