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.
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. Why do we exist: to bring hope, to help, to support, to be together, to bring Normality for those who consider the most Extraordinary thing in the lives of affected person.
Support the MMA Life Association and in this way come along with us, conveying together a message of solidarity with the people suffering from MMA and their families. Together, we can transform the individual experience of patients and their relatives into collective action, community support and protection. It is vital to build a community that provides security and assistance.
Thanks for your involvement and for being with us in designing a machine that does not offer the Extraordinary but the Normality.
Facebook: https://www.facebook.com/Asociatia-Viata-mea-MMA-231116523758544/?ref=aymt_homepage_panel
Sincerely Yours,
Ana Maria Ivascu
Founding member
Viata mea MMA este o asociatie non-profit infiintata 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 ce 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.
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. De ce existam: sa aducem speranta, sa ajutam, sa sprijinim, sa fim alaturi, sa aducem Normalul ca Extraordinar in viata celor afectati.
Sustineti Asociatia Viata Mea MMA si astfel veniti alaturi de noi, transmitand impreuna un mesaj de solidaritate cu persoanele suferinde de MMA si cu familiile acestora. Impreuna, putem transforma experienta individuala a pacientilor si a rudelor acestora in actiuni colective, suport si consolidarea comunitatii. Este vital sa construim o comunitate care sa ofere siguranta si sustinere.
Multumim pentru sprijin si pentru ca va implicati alaturi de noi in conceperea unei masinarii care nu ofera Extraordinarul, ci Normalul.
Facebook: https://www.facebook.com/Asociatia-Viata-mea-MMA-231116523758544/?ref=aymt_homepage_panel
Cu sinceritate,
Ana Maria Ivascu
Membru Fondator
