Dear ,
This first newsletter from the Nina-Foundation focusses on Nina. In future editions we will also report on other children and on the activities of the Nina-Foundation.
Nina's development
Nina is now 2.5 years old. It is already one and a half years ago that Nina was diagnosed with Angelman Syndrome (AS). In this short time everything has changed for us. I believe I never learned so much as I did in this short period. As a family we have strongly grown together. If I am very honest I have to confess that this process has made us stronger and gave our life a special meaning.
Nina is a real angel and I more and more believe she is with us for a reason. Everything makes much more sense now. Of course it was difficult to accept and it sometimes still is. But we can put the matter into perspective much better now. The things we used to thing were important are not important anymore. We are very happy.
Nina’s therapies
From the moment we knew about the diagnosis we started different therapies. Especially physiotherapy really helped her.
With AS children it is very important they get stimulated a lot. We did this and with big success! We got to know a lot of AS kids and their parents. What we saw, is that there is a lot of difference between them. The first girl we got to know was 9 years old. It was a shock when we realised that the communication with those kids is so bad. It made us really sad but we got also verz excited to see other kids. By now we know a lot of fantastic AS kids.
We got to know their qualities. Angels understand often much more than you think they do. Communication stays a problem for all the parents. We tried different therapies and by the end of last year we found a therapy from Brain Solution. The parents themselves do this program, not by therapists. You do their program every day for 3 hours. It exists of different parts, like massages and intelligence program.
In spring Nina will join an anthroposofic school. This week she went there to get to know everyone. It was a great experience for her. The kindergarten takes only mental handicapped children. There are only 7 children and 3 teachers. Most children there are 5 years or older. That means that Nina is the youngest. Some children were very strong and did not listen well. They pulled Nina’s hair and took away her dummy. I started doubting and thought she might be too young. Now she will only go there 2 mornings a week. The teachers are very good. They sing a lot and she will get massages and physiotherapy there. Nina reacts very well to music. She starts dancing, drumming and clapping her hands. It is great!
Nina plays the piano in musictherapy
The school has an anthroposofic lifestyle. They cook only biological vegetarian food and all their toys are made of natural materials. They like soft colours and don’t offer the kids too many things. This is very good for Nina. Like that she can concentrate on one thing at the time. Concentration is not what Nina is very good at, in general.
Since December 2006 she takes medication against the epileptic seizures. Doctors made a scan of her head and they could measure that Nina had a lot of seizures during the day. I could not believe it because we never saw them. We almost felt bad parents, but now we have learned that there are seizures you just can’t see. I was always very proud that Nina (despite her syndrome) was very healthy. Now it wasn’t the case and I was very sad. But Thomas wasn’t. He was very happy there was a medication for it. Now that she is taking it for more than half a year we are very glad she hasn’t got the big seizures anymore and she has changed a lot.
Nina and Nils in the park
For a while we are looking now for the right house. We would like to have a house where we can see Nina from all parts of the house. At other AS families we saw that you always have to keep an eye on those kids. Even when they are older Angels can be very naughty and extremely active.Therefore a bungalow would be the best solution. If she will be able to climb stairs without help, we don’t know. Most children find it hard to see 3 dimensionally. Fortunately Nina is very careful.
We still haven’t found a house but a lot of things have become clear. Some time ago we’ve visited a home for handicapped people. In this special village there live 70 people. It has again an anthroposofic lifestyle, just like Nina’s school. The age there varies from 16 till 60 years old. We thought it would be handy if we live close to that village in Breitenfurt. When Nina is mature she can still be close to us. It all seems very far away but we think it is good to look further into the future.
We are very glad to have people around us that have helped us . With your donation we were able to give Nina these special therapies and by buying the proditti di Nina you can help other children like Nina.
If you know Nina you can see that she is developing very well, step-by-step, day-by-day.
A big thank you for all your support. Keep up the good work!!!!!!!!!!!
Lots of love,
Martine
Martine Schramm
Mother of Nina
martine.schramm@nina-foundation.org
Please visit our websites:
www.nina-foundation.org
www.prodottidinina.com (great italian products supporting Nina)
For donations:
Donation to Nina: Bank Austria 23474556
Donation to the Nina Foundation (www.nina-foundation.org): Rabobank nr 2433535345