A Cure for Holly

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Aujourd'hui ayant une petite fille nommé Holly, âgé d'a peine 15mois diagnostiqué du SYNDROME DE RETT, nouvelle reçu le 14 mars dernier, Ce que j’ai appris, du neurologue rencontré, à partir de 18mois ce que je constatait déjà difficile, pour elle n'est qu'un commencement a une descente aux enfers remplis de souffrance...une régression qui signifiera, perte de l'usage de la parole, motricité, respiration difficile, ingurgitation difficile (Dans certain cas impossible),début de fréquente crise d'épilepsie, automutilation etc...espérance de vie inconnue...si on peux appelé cela une vie. En tant que père directement touché par la souffrance d'Holly et sans oublier les autre enfants ayant reçu le même diagnostic je me dois de faire un appel à l'aide afin de faire avancé la recherche qui avance sans toutefois encore avoir trouvé le remède par manque d'argent flagrant. Cette maladie est présentement non réversible. Je continue de gardé espoir, ensemble on peux changé les choses.


English

Today we have a little girl named Holly, aged just 15 months, who was diagnosed with RETT SYNDROME on 14 March. What we have learned about this devastating disorder from a neurologist is that Holly is only at the beginning of a descent filled with challenges and suffering…a regression that will likely mean loss of speech, mobility, difficulty breathing, difficulty swallowing (in some cases impossible), the onset of seizures, and unknown life expectancy...If we can call it a life. As a father directly affected by the suffering of Holly and not forgetting the other children having received the same diagnosis, I call for your help and support to advance the research, which urgently needs funding. This disease is currently non-reversible. I hope that together we can change things.


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 research to a cure 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.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (7)

  1. Arbour Sylvain 
    2 weeks ago
    $75
  2. Jean-Francois Racine 
    3 weeks ago
    $50
  3. Lina Benfeito  
    3 weeks ago
    $100
  4. Francois Mitchell Soluspa 
    3 weeks ago
    $50
  5. Eric Pelletier 
    3 weeks ago
    $50
  6. Anne Mercier 
    3 weeks ago
    $25
  7. Ruby Collin  
    3 weeks ago
    $100

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