[:ro]Asociatia Viata Mea MMA[:en]Viata mea MMA (My MMA life)[:]

[:ro]Vino sa ALERGI in echipa Viata Mea MMA la Maratonul Bucuresti Raiffeisen BANK! 

Suntem mici si ne dorim sa ramanem mici dar cu suflet mare cat sa putem face minuni. Suntem o asociatie non-profit infintata in Aprilie 2014 cu scopul de a sprijini cresterea, ingrijirea sanatatii, dezvoltarea fizica si psihica a copiilor diagnosticati cu Acidemie Metilmalonica (MMA). In prezent in Romania se inregistreaza doar cateva cazuri (pana in 5). Pe scurt corpul lor nu este in masura de a sintetiza proteina si grasimile (lipide) in mod corespunzator ducand la o acumulare de substante chimice intermediare toxice. 

Este una dintre cele mai grave tulburari metabolice, dar si foarte rara, cam 1 din 50.000 de bebelusi la nivel mondial fiind afectati de aceasta boala transmisa ereditar. Bebelusii prezinta reactii de tipul letargiei, hipotoniei, dar si afectiuni renale severe, intarzieri in dezvoltarea intelectuala, iar formele severe conduc direct la coma sau deces. La fiecare criza manifestata organismul poate pierde simturi neurologice si fizice diferite (vaz, auz, mers, etc). Dar este important de stiut: cu tratament adecvat sunt sanse foarte mari ca pacientii sa aiba o viata normala. 

Natura complexa a bolii si accesul limitat la tratamente si servicii necesare fac ca de cele mai multe ori membrii familiilor afectate sa fie singurii solidari cu cei bolnavi, singurii care le ofera sprijin si ingrijire. Fenomenul este destul de complex si trebuie inteles : boala nu se trateaza in Romania, proteina sintetica indispensabila, medicamentele necesare si produsele farmaceutice alimentare nu pot fi achizitionate din tara si nici nu pot fi compensate de catre stat. Cel mai important, produsele alimentare speciale care au extrase proteinele din ele (faina, orez, lapte, paste, biscuiti, cereale, etc), fiind esentiale si obligatorii pentru cei afectati, sunt cel mai greu de sustinut financiar, dar reprezinta sansa lor la o viata normala daca sunt consumate. Au nevoie de supraveghere medicala si tratament pe viata, cu analize periodice care se efectueaza doar in afara tarii pana in prezent. 

Cati copii incercam sa sustinem? 

3 – cei 3 Fantastici : Edu, Rares, Ari 

 

Avem nevoie de tine pentru a-i ajuta sa creasca precum orice copil NORMAL! Avem nevoie de tine in echipa! Te chemam sa alergi impreuna cu noi pe 13-14 octombrie pentru DIVERSITATE. Prin proiectele sustinute ne dorim sa strangem cumulat fonduri pentru: 

  • EDU – sustinerea costurilor sedintelor de terapie comportamentala pentru 1 an,  astfel incat in Septembrie 2019 Edu sa poata intra in clasa 0 la o scoala normala. 
  • RARES – sustinerea costurilor pachetelor cu mancare medicala pentru 1 an, pentru ai oferi diversitate si a reduce riscul crizelor metabolice. 
  • ARI – sustinerea costurilor unui abonament de hidrokineto pentru 1 an,  putand astfel sa recupereze deficienta aparatului locomotor. 

Persoana de contact: Ana Maria Ivascu Membru Fondator. Telefon: 0745 047 681. Data limita de inscriere este 28 septembrie. 

Daca nu poți poti alerga anul acesta, dar vrei sa ajuti poti sa: 

  • devi voluntar in zilele curselor. Sustinerea ta o vom aprecia pentru ca stim ca vine din suflet. Avem nevoie sa sustinem maratonistii pe traseu,  sa surprindem momentele speciale prin poze si filmulețe si sa le transmitem in direct pe pagina de Facebook (Asociatia-Viata-mea-MMA-Page ), in plus, vom activa un punct de hidratare pe traseu si sa nu uitam sa ne distram si sa aducem zambete cat mai multe. Trimite-ne un mesaj la anamaria.ivascu@gmail.com cu datele tale de contact si noi te vom contacta. 
  • donezi. Scrie-ne un mesaj la anamaria.ivascu@gmail.com si noi te vom ajuta cu detalii. 
  • fi promotor! Spune-le si prietenilor tai despre echipa Viata MEA MMA si cauza noastra. Incurajeaza-i sa ne fie alaturi. Ca organizatie vrem sa venim alaturi parintilor, fratilor, bunicilor, sotilor, rudelor apropiate, prietenilor ale caror vieti sunt afectate zilnic si care sunt “zi de zi, mana in mana” alaturi de cei afectati. 

Sustineti-ne 

Promovati-ne 

Incurajati-ne 

 

Ne vedem la maraton in  Piața Constituției pe 13 si 14 octombrie! 

 [:en]Be part of Viata Mea MMA team and run at The Raiffeisen Bank Bucharest Marathon! 

 

We are small and we desire to remain small but big-hearted people enough to create miracles. Viata Mea MMA (My MMA life) is a non-profit organization founded in April 2014 in order to support the growth, health care, physical and mental development of children diagnosed with methylmalonic acidemia (MMA). Currently in Romania are registered few cases (up to 5). Briefly their body is unable to synthesize protein and fats (lipids) properly leading to an accumulation of toxic intermediate chemicals. 

 

It is one of the most serious metabolic disorders, but very rare, about 1 in 50,000 babies worldwide are affected by this hereditary disease transmitted. Babies have side type lethargy, hypotonia, and severe kidney problems, delays in intellectual development, and severe forms directly lead to coma or death. Every crisis can lose body manifested neurological and different physical senses (sight, hearing, walking, etc.). What it is important to know: with proper treatment are very high chances that patients have a normal life. 

The complex nature of the disease and limited access to necessary treatments and services make that most often affected families to be the only one in solidarity with the patient, offering support and care. The phenomenon is quite complex and must be understood: the disease is not treated in Romania, synthetic protein indispensable, necessary medicines and pharmaceutical products supply can not be purchased in the country and can not be compensated by the state. Most importantly, protein fibers and special foods that have extracted proteins from them (flour, rice, milk, pasta, crackers, cereal, etc.) is essential and mandatory for those affected, they are the most difficult to sustain financially, but is their chance at a normal life if eaten. They need medical supervision and treatment for life, with periodic analysis which is performed only outside the country so far. 

 

 

How many children we are trying to support? 

3 – The Fantastic 3: Edu, Rares, Ari 

 

We need you in order to help them grow as any NORMAL kids! We need you in the team! We call you to run together with us on October 13th-14th  for DIVERSITY. Through our projects we try to raise funds for:  

  • EDU – support therapy hours sessions for 1 year,  so in September 2019 Edu to be able to go on a normal school in first class. 
  • RARES – support the cost of medical food for 1 year, for reducing the metabolic crises risk 
  • ARI – support the cost of a hydro kinetic fee for 1 year, for recovering the actual deficiency. 

Contact: Ana Maria Ivascu Fonder Member; phone: 0745 047 681. Last call on 28th of September. 

If you can’t run this year, you can also help us in others ways: 

  • As a volunteer on the race days. We need help to encourage runners on the route, take pictures and movies to promote on our Facebook page (Asociatia-Viata-mea-MMA-Page ), to help us on the hydrating point, to make fun and bring smiles. Send us a message to anamaria.ivascu@gmail.com  with your contact details and we will contact you. 
  • As a donor. Send us a message to anamaria.ivascu@gmail.com  and we will help you with all the details you need. 
  • Spread the word. Tell your friends about Viata MEA MMA team and our goal. Encourage them to be near us. As an organization we want to come together with parents, siblings, grandparents, spouses, close relatives and friends whose lives are affected daily and are „daily, hand in hand” with those affected. 

Support us 

Promote us 

Encouraged us 

 

 

See you at the marathon in Constitution Square, on October 13th-14th! [:]