2009.02.24 – Bułgaria prosi o pomoc - Stowarzyszenie Razem - Organizacja Pożytku Publicznego

2009.02.24 – Bułgaria prosi o pomoc

European Down Syndrome Association Logo

Jak już wcześniej pisałem, sytuacja osób z zespołem Downa w Bułgarii nie jest łatwa. Dzięki Lianie z Rumunii, kóra doświadczała podobnej sytuacji jeszcze 10 lat temu, Bułgaria ma głos w Europie. EDSA postanowiła działać i wspierać Bułgarię. Pierwszym krokiem ma być przyjęcie organizacji rodzicielskich do EDSA a później tak już pisałem, będziemy Bułgarię wspierać. Emilia napisała bardzo długi list, który przypomina mi sytuację Polski z lat siedemdziesiątych. Może i Wy macie jakieś pomysły jak im pomóc. Czekam na sugetie, a poniżej cąły list Emili z Bułgarii.

Dear Liana,

happy to see you again.

As you maybe know here in Bulgaria now we are in a very hard finance crisis.Prices to everything goes up every minute, salaries stay the same.Many firms close,so many people haven't got work already.

Very hard to do something in Bulgaria now with national resources.We I mean my fondation for example haven't got any support from goverment or someone else.I mean not only finance support but moral also.We call media to come on March 21, they do not show none interes beside you have some personal friend who work in TV.

For example we informed the minister and some other politics about simpozium in BG on March 30, the final step of this project with Peter for early intervetion you know, no body react, so the big problem in Bulgaria still stays - integration of peoplle with SvD in the society. The problem with this begins very early immediately after birth of a child with SvD. The doctors in our hospitals always adviced the parents to abandon their child.They said that it maybe will die soon or if live his life will be horrible without smiles,that the child can not learn to talk read and ect. The most immportant thing that they said is that this child will need so many specialist to work with- speech terapevts, physcioterapevts, psychologs and ect .which cost so many money and the state do not help even with moral support, finance do not ever think, now in this crisis more.You know what is the situation of the parents after they have just so soon after having their baby realised that the child have some problem, so they said - " We can't afford to look after this baby, it won't be happy and normal child "and leave it .

Another problem people in Bulgaria they also do not support people with SvD.For example if a man with SvD 45 years old walk on the street every body begins to look at him strange and mockingly instead smilie as I did..The same happens and when a mother take for a wlk her childs.Everybody think why she is out side instead of keep this child at home.Untill the society do not accept peoples with Svd we can't do nothing.The poor children stay at home beside be in kindergarden.In my opinion it is bery important for them to be in normal kindergarens and schools not special.I have an example with a family child who is in a normal kindergarden from 1 year, now is 5 and looks and feel super.The big problem in Bulgaria is just this that childrem with Svd can't be in a normal schools.This is the sitation in Sofia, in province the situation is better because they don't have so many information and do not pay so much attention on this problems.

So finally most of the people are negative, there are positive also but very little part.

People just need to begin think positive, they need help for this.

Unfournatelly in Bulgaria there is no parents organization to a children with SvD for example, but soon maybe will be registrated because with starting with the project with Len and Peter I have talked a lot with them to do something to help their children and we have I mean our foundation organized March 21 last year fir the first time so we have some start.This year March 21 will be organized from some little group parents which I count for my personal siccses that I have succseed to make them to do something, not only talking.

Maybe we will send our poster from last year I have send it to you before.

How to help and support a better life of DS in BG?

We need to have a day center for children wih SvD.Now we are looking for appropriate building and then we will need finance for equipment and repair. After that we will need money money for salaries to people who work there.I was thinking to rely on donors but it won't happens I am sure.No body have money and if have do not give for such causes.Lasr year we with great difficulty sucssed to organize March 21 let's say 2 000 euro.Finally my husband firm payed. The state do not stimulate charity in no way.

We need to apply some projects for finance.We have a lot of ideas how to help about the situation to be better but we haven't got the possibility to do it.For example we can put someone to goes in the hospitals where the baby with DS has born and to talk with his parens tp explain them that this is not so terrible to have a baby with DS to advise the parents what to to,to give cordinates to families which have child with DS and live a normal life, but there is no salary for this person.

So please if You know some addresses where we as a fondation can apply for finance and other projects please tell us.

I was wondering can we ( I mean my foundation )become a member of EDSA and if we can what we need to do.

Maybe soon in Bulgariq will also have a parents organization and they also will be our partners.

We need to make centur first I think and to find out how to work I mean how to assure salaries for people who will work there.We can put some fee parents to pay but they won't be enough and here we have so many children with DS without parents, the state do not pay such things.

Liana you have much more try in this things, please give us an idea how to begin and to who to ask for help.

This is what I think as a specialist who work with children with Ds, soon I will send to you a letter from parents to the children with DS to see what they think.

Sorry if have mistakes but I am sleepy, because we have another baby already again a girl - Ioana already 5 mounths,so I look afters 2 little kids, go to work twice a week, work on a projects and work in the house and I am really very tired already.

I will be happy if I was succsed to offer you the situation with DS in Bulgariq, unfournatelly we have so many work here, so if You can tell us how to work better it will be very nice and helpful.

I will wait for your answers!!!

Regards

Emilia