Subj: Letter 96 11 05 Date: 96-05-20 07:38:17 EDT From: Yngve.Wallenius@hul.liu.se (Yngve Wallenius) To: CatNDon@aol.com
Nyköping 11 May 1996
Dear Don and Cathie Sears.
Here is a long distance e-mail letter from Sweden. As you will soon understand this letter is about our doughter Cecilia and Apert´s syndrome. I recived your e-mail address from Kajsa Dohrmans parents, Jan and Annalena. The Apert sociaty had a meeting last weekend. On this meeting they informed that they had found information about Apert´s syndrome on Internet. They also had printed out Teeter´s page and showed us that. So I dicided to write a letter to you and hope that Cecilia could also be one of Teeter´s friends.
We, Yngve (the father), Lisa (the mother) and Cecilia (14 years old) and her siblings Alexander (17) and Andrea (7), live in a litle town, Nyköping, about 100 km (160 miles) south of Stockholm, Sweden.
Cecilia, Cissi as her friend call her, was born the 27 February 1982. The beginning of her life was not so easy. She had difficult to breathing. She spend her first days in a incubater on the NICU. The pediatrican told us that she probaly would not survive long. He also informed us that she had a rare syndrome - Apert´s syndrome. If she should survive, she would be so mentaly retard that he advised us not to take her home. But Cissi was a little bit stronger and wiser than the doctor belived and after two weeks she was ready to go home.
We started to read everything we could find about Apert´s syndrome, but it was difficult to get any information. After four months we met another family with a girl who also had Aperts. She was born in december 1981 and had already been through her first surgery. They had found a few papers and articles about Apert´s syndrome and the situation become clearer.
Cissi was a six moths when she had her first operation. After this operation we got a complete different little girl. For the very first time she looked at us and smiled, and was quite. Before the operation she was aneasy and screamed a lot. The results of the operation give us a new hope for Cissis future development.
It turned our that the first operation was not succesful, so after one year she had to rego surgery. This time everything went well. The last cranofacial surgery that was done was a Le forte III, when she was four years old. Her surgery is done by the craniofacial team in Gothenburg. She had, naturally, syndactylis and after several operations has now five fingers on each hand. The hand is handsom - but there is not so much mobility in the fingers.
She learnd to walk, talk and everything that all the other children do, but not as early. Of course we where very often in the hospital because of infections, surgery, development control etc. life was rather easy. During the days she went to her daycare centre where she played with friends. The main problems in this time where medical.
Her development at the time for schoolstart was normal. She begun in a nighborhood regulary school. After school started everything went wrong. The school and her teacher had no understanding of education for a girl with multihandicap. (At this time we also found out that Cissi was visually impaired). The result was that Cissi didn´t learn much and that she slowly regressed. The other children in her class was very nice, and really took notice of her, but she only had one who was a close friend . Unfortunately the little girl died in a cardiac attack at the end of fourth grade. From that time on she had no playmate in the school. So the school day was very lonely for her, and she didn´t like go intoo shool. Also the school work tended to be much more difficult for her. Lisa and I began at this time search for alternative school forms. The headmaster and Cissis teacher proposed placing her in a segregated classroom for mentaly retarded children. But as she was, according to psycological tests normal, we did not think that was a good idea. At last we found a school with a special class for physical disabled children. The main problem with that school, was the distance,180 km (288 miles) from home. Thus we had to find out how she should travel to the school and where she should live during the weekdays.
Her situation has now completly changed. She had attended this new school since last autum. There she has found new friends who are a simular situation to her. Every Monday a taxi comes and drive her to the school, and the same taxi drives her back home on next Friday. In the weekdays she lives in a home with seven other disabled children between 13 and 16 years old. She now has her friends around her all the time. She is really happy in her new situation. And so are we.
As you understand there a long story to be told, if I should describe Cissis whole life. Therefore I´l stop here. I hope I will have more opportunitis to write more about Cissi and us some other time.
It has been a long time since I have used my english in this way. With a bit of help from my memory, school-english, an american friend and of course a dictionariy I hope I get the mostly right.
It would be nice to get an answer from you sometime. Unfortunately I do not have Internet connected to my computer, but you can use my e-mail address to my work Yngve.Wallenius@hul.liu.se.
You can also contact us at:
Yngve & Lisa Wallenius
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