Enucleation

Hello, ( ptr Romana mai jos )

My name is Tudor and I have 11months. Until two months ago my life was perfect! After, my parents found out that I was born with Bilateral Retinoblastoma. Retinoblastoma is a cancer that starts in the retina, the very back part of the eye. Normally the Rb1 gene helps keep cells from growing out of control, but the change in the gene stops it from working like it should and continue to divide and grow out of control, forming cancer. Rb1 mutation is present in all the cells of my body, including all of the cells of both retinas. I live with the risk of developing numerous forms of cancer. Right now my parents are struggling to live with me in Paris, two month's ago I started a chemotherapy treatment but this disease got my eye's, now I am blind... Doctor's say by the end of this month enucleation of both eyes will happen. Enucleation is surgery, removal of eyes. Word's are uselles in this moments, true hell! Doctor's in my country, Romania, are to be guilty for this crime! When I was only 3months my mother took me to a doctor who said I am perfectly healthy! more than that she said to my mother to come back at the age of 1year because I was to small??? If my parents haven't notice leukokoria and taken me to Paris, by the age of one year I should be dead. I am a very very strong little man and most important I am very happy! I want to stay happy!

I need to go to Australia for better treatment, better life. Australia has the best blind school's in the world, there, I will learn how to manage this abis. They have a laser technology wich helps blind children like me to move aroud object's. They will also teach me how to use a computer and how to read, and more and more important skills that will help me in this wild journey i did not ask to begin. It is very important that I start this new life at soon as possible, now as an infant! The big problem is that it is very hard for my family to access a visa for australia. My mother has 23years, my father 29years. It is basically impossible for us to work for a living right now. We need help to access a visa Au and start a new life there, pay the blind school, treatment, I need to go to a hospital every week for blood test, it s very important to detect early, many cancers wich stoke me everyday!

I will not go gentle into that good night! I will rage, rage against the dying of the light!

P.S. I start using the potty when I was five month's old! :-D

Salut dragi prieteni,

Numele meu este Tudor si am 11 luni, nascut intr-o zi de marti 13 cu o mutatie la cromozomul 13. Cu aproximativ 2 luni in urma, am fost diagnosticat cu Retinoblastom Bilateral. Retinoblastomul este o forma de cancer care porneste in retina, partea din spate a ochiului. Pentru orice om normal gena RB1 este foarte importanta, ea ajuta celulele sa nu creasca haotic, sa nu se cloneze la nesfarsit. In cazul lui meu aceasta gena este mutanta si nu are abilitatea de a opri celulele, clonandu-se fara control formand multe alte tipuri de cancer. Mutatia RB1 se afla prezenta in toate celulele din corpul meu incluzand celulele din ambele retine. Toata viata trebuie sa fiu tinut sub supraveghere si sa urmez tratamente si analize saptamanale. Desi in tara am fost la controale periodice la medicul pediatru, acesta nu a observat absolut nimic, din contra, desi parintii mei observasera cateva nereguli la ochisori, acesta a tinut sa mentioneze ca niciun oftalmolog nu are ce sa ii faca pana la 1 an. Norocul meu a fost sa ajung in franta ptr chimioterapie, altfel nu as fi apucat varsta de 1an . Din pacate tratamentul nu are efect si ochisorii mei nu vad lumea, nu-mi pot vedea parintii, familia, soarele, cerul ci doar ii aud si ii simt. Doctorii ne-au spus sa ne asteptam la sfarsitul lunii la Enucleatie(operatie de scoatere a ochilor ). Parintilor le este tare greu in situatia de fata. Chiria, traiul si tratamentele sunt foarte scumpe. Stiu ca am un drum lung si greu de parcurs dar sunt pregatit. Din burtica de la mami sunt fericit, zambesc, rad in majoritatea timpului iar muzica este alinarea mea. Trebuie sa ajung in Australia pentru un tratament mai bun, o sansa mai buna la viata. Australia are cele mai bune scoli pt nevazatori din lume. Acolo am sa invat cum sa ma descurc in acest abis. Acestia au o tehnologie cu laser care ajuta copiii nevazatori ca mine sa mearga si sa evite obstacole. Voi invata sa scriu si sa citesc cat si cum sa folosesc un calculator, plus multe alte abilitati care ma vor ajuta in aceasta calatorie nebuna la care nu am cerut sa iau parte. Este foarte important sa incep aceasta noua viata cat mai curand posibil, cat sunt inca bebelus. Marea problema este ca familiei mele ii este foarte greu sa acceseze viza pt. Australia. Mama mea are 23 de ani si tati 29, este practic imposibil pt ei sa munceasca acum. Avem nevoie de ajutor pt viza AU, sa platim scoala, multe tratamente si analize saptamanale. Este foarte important sa detectam timpuriu toate formele de cancer care ma pandesc in fiecare zi.

Multumesc din suflet!