Hope for Alesia

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ALESIA este un ingeras de 2 ani si jumatate nascuta Bucuresti, Romania.

S-a nascut si a evoluat normal pana la varsta de 6 luni cand ar fi trebuit sa inceapa sa vorbeasca si sa se ridice in picioare. Dar nu a facut-o.

Dupa multe evaluari medicale, ea a fost diagnosticata cu Sindrom Rett, o tulburare neurologica severa care afecteaza in mod necontrolat fetele.

Fetita a intrat intr-un program intensiv de terapie fizica si a evoluat pozitiv pana la varsta de 16 luni cand Rett a lovit dramatic. Copilul a intrat intr-un regres accentuat pierzand, in cateva saptamani, toate abilitatile castigate. Nu mai mergea in 4 labe, nu mai articula nici o silaba, limba a inceput sa i se contorsioneze si nu mai putea mesteca, si-a pierdut capacitatea de a apuca si a tine lucruri in maini.

Astazi, Alesia este ca o floare frumoasa care creste, se dezvolta, te incanta, dar care nu poate comunica.

Cu toate acestea, Alesia este o fetita luptatoare si optimista.

De mai bine de 2 ani, face cel putin 4 ore de terapie fizica in fiecare zi. La varsta ei are o siluata si musculatura perfecte.

In lumea ei, ingerul sau pazitor ii spune povesti frumoase, cu printi si printese, iar Alesia e vesela, rade  si e fericita. In lumea reala, Alesia este fascinate de lumea lui Mickey Mouse si in fiecare dimineata si seara asteapta cu nerabdare desenele animate cu eroul ei preferat.

Alesia are si va avea nevoie de ajutor toata viata, dar strategia propusa de RSRT – Drumul catre vindecare – este o raza de speranta pentru Alesia si pentru toti copii afectati de Sindromul Rett.

Orice suma este binevenita si ajuta la accelerarea cercetarilor catre vindecare.

Aveti recunostinta vesnica a Alesiei si a noastra


Alesia is a two-and-a-half-year-old little angel, born in Bucharest, Romania.

She was born and developed normally until the age of six months when she should have started talking and standing up. But she did not.

After many medical assessments, she was diagnosed with Rett syndrome, a severe neurological disorder that randomly afflicts little girls.

Alesia entered an intensive program of physical therapy and progressed positively until the age of 16 month when Rett struck dramatically. She regressed, losing in a few weeks all the skills she had gained. She no longer crawled, no longer said even a syllable, her tongue began to twist and she could not chew, she could no longer grab and hold things in her hands.

Today, Alesia is like a beautiful flower that grows, develops, enchants, but cannot communicate.

However, Alesia is a fighter and an optimistic little girl.

For more than 2 years, she has done at least 4 hours of physical therapy, every single day. At her age she has a perfect silhouette and muscles.

In her world, her guardian angel tells her beautiful stories with princes and princesses, and Alesia is jolly, laughs and is happy. In the real world, Alesia is fascinated by the world of Mickey Mouse and every morning and evening she looks forward to watching her favorite hero.

Alesia will need help all her life, but the strategy proposed by RSRT – Roadmap to a Cure - is a ray of hope for Alesia and for all children affected by Rett Syndrome.

Any amount you donate is welcome and helps speed the research towards a cure.

You have Alesia’s and our eternal gratitude.

Adrian Potorac

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.

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