A Cure for Mia

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Our precious beautiful daughter Mia just turned 2. She is the most happy and bubbly little girl, whose smile lights up the room. Like most kids her age, Mia loves music and "dancing", going to the park and most of all her baby brother Gianni. She is a strong, determined little fighter who never gives up and has the soul of a lion!  Unlike her peers, Mia isn't walking, she isn’t able to have conversations and she cannot purposefully use her hands, as she has Rett Syndrome. Rett Syndrome has robbed Mia of her ability to explore and fully interact with the world around her. She is limited in her body, with sound intellect, but struggles to communicate.

Rett Syndrome is a rare debilitating neurological disorder that is caused by a random mutation on one X chromosome and affects 350,000 girls and women worldwide. While she may appear completely healthy at birth, devastating symptoms await and present themselves at around 12-18months of age. The resulting regression leads to lifelong impairments including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the girls lose the ability to walk.

However, there is real hope. Rett Syndrome has been proven in labs to be reversible and curable. Numerous clinical trials are underway to develop treatments that will allow girls with Rett Syndrome to be more functional and Gene Therapy holds the promise of a complete cure.

Our wish for Mia is a childhood full of memories of singing along to the Wiggles, Justin Bieber and Drake, chasing her brother Gianni around the house and endless conversations about why the sky is blue.

A cure is almost a sure bet, but we need it NOW. With further funding we can augment and expedite research and give Mia the only gift she really wants; to be free from Rett Syndrome! We don't want our daughter to be defined by this! We need your help to make this miracle possible for Mia and all the other 350,000 girls worldwide by donating to the Rett Syndrome Research Trust (RSRT).

Thank you for your support from the bottom of our hearts.

Adrian and Chantal Mancini

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 (27)

  1. Edrian Colina 
    4 weeks ago
    $5
  2. Run Melbourne 17  
    1 month ago
    $3,633
  3. Ultimate Gas Heaters 
    2 months ago
    $320
  4. Ringwood Court 
    2 months ago
    $330
  5. Chocolate Fundraising 
    6 days ago
    $450
  6. GoFundme 9/17  
    6 days ago
    $27,714
  7. Joe & Lina Mancini 
    2 months ago
    $3,965
  8. Anonymous 
    2 months ago
    $100
  9. Rhys Jackson 
    3 months ago
    $50
  10. Sandra Fiorillo 
    3 months ago
    $100
  11. Denis Vucinic 
    3 months ago
    $200
  12. Ebony F 
    3 months ago
    $10
  13. Renee Cardamone 
    3 months ago
    $250
  14. Dianne Portelli 
    3 months ago
    $20
  15. Nick Karandanis 
    3 months ago
    $100
  16. Gaurav Saxena 
    3 months ago
    $100
  17. Stacey Capaldo 
    3 months ago
    $150
  18. Bill Asimakidis 
    3 months ago
    $100
  19. Shirley and Graeme Jessen 
    3 months ago
    $100
  20. Natasha McCarthy  
    3 months ago
    $100
  21. Kris El-Helou 
    3 months ago
    $200
  22. Louisa Guterman 
    3 months ago
    $100
  23. Mafalda Bombardieri 
    3 months ago
    $7,550.20
  24. John Caldarelli 
    3 months ago
    $100
  25. Mick Berkley 
    3 months ago
    $20
  26. Emily Holland 
    4 months ago
    $150
  27. Adrian Mancini 
    4 months ago
    $3,765

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