Alyssa’s Miracle in the Making

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Ever since I was a toddler, I have taken care of my older sister, Alyssa. I would hold her hand and walk to the park, turn on her favorite movie, and read many books to her. I never realized that typically older siblings did this for their younger siblings. My sister, Alyssa, was diagnosed with Rett Syndrome at the age of four, two years after I was born. I’ve always known her as the most joyous, radiant person I have ever met. As I got older, I started to notice that  the beautiful, strong, and resilient girl I knew could not perform the same simple tasks and actions, such as eating and going to the bathroom, that I could. Being two years younger, I was disheartened to learn that my sister would never be able to run around with me or even talk to me.

Rett Syndrome is a rare, spontaneous genetic mutation that affects brain development in girls. The symptoms are devastating and never ending. Personally, for my sister, Alyssa, she has thousands of seizures, scoliosis, contractures, and muscle wasting. She no longer speaks or walks independently. My sister is trapped in her body by Rett Syndrome, but I know, behind this ugly veil is a lovely, vibrant girl hoping to be cured.

Yet, in spite of all this misery, the hopes and dreams for my sister to finally become who she is meant to be are possible. Seeing that my family’s struggles affect many other families who have girls with Rett drives me crazy and I want to do everything in my power to change their lives. We absolutely must succeed in our quest for a cure, and we can only succeed with your support.

As Alyssa is preparing for her 21st birthday, I welcome the miracle on the horizon to finally be the younger sister. No more bibs and sippie cups, pull ups and onesies, wheelchairs and physical therapy, oxygen tanks and valium. Just hour long conversations on everything we have missed sharing with each other and doing with each other. Urgency to support this cause is an understatement.  For the first time, a clinical trial is being planned that will attack Rett at its genetic core. RSRT (Rett Syndrome Research Trust) and its researchers are working hard to fix the single gene mutation that so drastically changed the course of her life. A biotech company is taking steps to turn RSRT research into a clinical trial in gene therapy—a trial that could lead to improvement not just of a symptom or two, but of her entire life. It’s possible that this could help her walk, talk, and could let her live the dreams that I know she has.

I believe Rett Syndrome can be cured, but time matters for my sister. As she gets older, the scarier Rett becomes and I face the responsibility of caring for my older sister without my parents. I can’t help but wonder what gene therapy would look like for my sister as she turns 21. I do not expect everything to be like it never happened, but I do think it’s possible that gene therapy, coupled with intensive rehabilitation, could potentially result in improvements of her life, today. It’s possible she could learn to balance and walk independently, regain hand function, speak, and so much more. Although Alyssa’s speech is trapped inside and she cannot advocate for herself, I know she would do the same for me. In the 17 years since Alyssa was diagnosed, this is the first time our family has received such an optimistic solution to helping Alyssa. Our family keeps talking about the things we can imagine Alyssa saying to us in her own voice, from hearing her demands, frustrations, what she has seen, how she feels, and her opinion. Please support the research guided by RSRT with their ultimate goal to become obsolete – by finding a cure.

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 (33)

  1. Linda Lee 
    4 months ago
    $500
  2. Greg Thomas 
    9 months ago
    $1,500
  3. Linda Lee 
    10 months ago
    $100
  4. Patricia Inderjeet 
    10 months ago
    $100
  5. Patricia Inderjeet 
    10 months ago
    $100
  6. Darlene Saar Graybeal 
    11 months ago
    $250
  7. Charles McBride 
    11 months ago
    $500
  8. Muslim Lakhani 
    11 months ago
    $500
  9. Susan Schmieg 
    11 months ago
    $100
  10. Marlena Edwards 
    11 months ago
    $50
  11. Ashley Hunnicutt  
    12 months ago
    $100
  12. Rick Robinson 
    12 months ago
    $250
  13. Gregory Thomas 
    12 months ago
    $250
  14. Mary (Frances) Cooper 
    12 months ago
    $25
  15. ERIC RUIZ 
    12 months ago
    $100
  16. Anonymous 
    12 months ago
    $25
  17. Eileen Gutierrez  
    12 months ago
    $25
  18. Caitlin Hadjis 
    12 months ago
    $15
  19. Danya Shere 
    12 months ago
    $25
  20. Derrick Hicks 
    12 months ago
    $250
  21. Ani Chadoian 
    12 months ago
    $50
  22. Anonymous 
    12 months ago
    $25
  23. Theresa Cincione 
    12 months ago
    $50
  24. Sonja Allen 
    12 months ago
    $25
  25. Patricia Inderjeet 
    12 months ago
    $100
  26. Parsa Milanizadeh 
    12 months ago
    $100
  27. Sepideh Milanizadeh 
    12 months ago
    $100
  28. Anthony Xereas 
    12 months ago
    $500
  29. Faith Weber 
    12 months ago
    $100
  30. Kenneth Orbeck  
    12 months ago
    $100
  31. Shodi Razavi  
    12 months ago
    $100
  32. OSMIN Ramirez 
    12 months ago
    $50
  33. Houman Jalali 
    12 months ago
    $500

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