Daria Hopes for a Cure

(Daria inca spera)

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Intr-o frumoasa zi de septembrie mi-am tinut pentru prima data bebelusul in brate,o fetita frumoasa,sanatoasa cu o greutate de 4 kg si 51 cm inaltime. O printesa care de atunci ne lumineaza vietile, ale parintilor dar si ale bunicilor. Am vazut-o apoi crescand, razand pentru prima data, am auzit-o strigandu-ne pentru prima data"ma-ma", "ta-ta" sau cautandu-l pe "twi-ty"! La scurt timp dupa prima aniversare intuitia mea de mama incepe sa-mi spuna ca ceva nu este in regula cu fetita mea. Faptul ca nu mai rostea cuvintele pe care le invatase, mersul sacadat si dezinteresul de jocurile si vocile noastre. In prag de Iepuras a venit si vestea socanta: Daria va fi un copil special, tulburare in spectru autist (TSA) sau un sindrom rar, o boala incurabila Sindromul Rett! (o forma rara si grava de autism, o tulburare neuropsihomotorie care rezulta datorita unei mutatii la nivelul genei MECP2). A fost cea mai grea zi din viata mea, a noastra a tuturor celor care o vazusem crescand pana atunci, nu m-a speriat atat de tare boala in sine ci faptul k nu puteam concepe ca nu o voi mai auzi stringandu-ma "ma-ma" sau ca nu o voi mai vedea jucandu-se cu manutele ei grasune, ca nu va alerga niciodata, nu se va bucura de viata! Insa trei ani mai tarziu speranta invie cand gasesc pe internet o organizatie nonprofit Rett Syndrome Research Trust care se ocupa cu gasirea unui leac pentru "ingerii tacuti"caci asa sunt numiti"silent angels". Si au si vesti bune pentru noi. Inca asteptam un miracol, o speranta, sa ne vedem fetita bucurandu-se de viata, jucandu-se cu fratiorul ei si nu in ultimul rand, sa o pot auzi spunand "mami te iubesc! "Pentru asta nu ne pierdem speranta, Daria inca spera!

Pentru asta rugam toti prietenii, mai apropiati sau mai indepartati, sa doneze, pentru ca Daria si alte fetite cu aceasta boala cumplita sa aiba o sansa de vindecare. Tot ce veti dona va merge direct in fondurile asociatiei. Va multumim foarte mult

It was a sunny day of the middle of September when I held in my arms my first child, my little princess. She was a healthy baby girl who came into this world weighing 4000 g and 51 cm in height. She was so sweet—our little angel. We were so excited to watch her grow up. She laughed a lot and was so funny. Most exciting of all was when we heard her calling us "ma-ma", daddy," and searching for "tw-ity." She loved our voices and our singing and was sharing all her love with us!! But after her first birthday I felt that something was wrong. At a year old, Daria could not stand up by herself, and she tried to walk in a very strange manner. It was her second Easter when we received the cruel news that she has Rett Syndrome, a neurological disorder with no cure and with terrible symptoms.

It was the worst day of my life as a mother to find out that your child won't be what you hoped for so much. We were told that she would never speak; I could never hear her calling me “mommy” again. There was nothing we could do except pray for a miracle. That miracle came after three years when we found out about an organization called the Rett Syndrome Research Trust based in the U.S. This gave us hope again, because the Rett Syndrome Research Trust has a goal of spurring scientific research that will lead to treatments and a cure for Rett Syndrome. But they need support to make this research possible. That’s why I am doing this campaign. I hope very much that all of my friends and family will support it, to make a difference to Daria and many other families suffering with Rett Syndrome. Everything you donate will go directly to research to help find a cure. Thank you so much.

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 (3)

  1. Babanau Gheorghe 
    3 years ago
  2. Babanau Ioana 
    3 years ago
  3. Tim Freeman 
    3 years ago

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