Monika

Twenty-three years ago, I came to Australia from Switzerland and after four years here, Jasmin was born. We have a son Roger, who is 26 years old now. I had a fairly normal pregnancy and Jasmin was born on term. On the second day after her birth, she was transferred to Princess Margaret Hospital because of respiratory problems associated with an infection. What was going on, my daughter had been taken away?? I had no Idea what was going to happen. Is everything going to be ok?? Is this just a routine thing??
I couldn’t have her next to me. I saw all these other mums having their babies next to them. I can still remember my first night without her. I was trying to calm down by telling myself that everything was going to be fine. It felt like an eternity until I was able to see her the next day.

After a few days we had a meeting with the doctor. He told us that Jasmin was diagnosed with 18p- Syndrome, which was the cause for some early seizures. It was a big shock for us because there was no indication whatsoever of any problems during pregnancy. 18p- Syndrome is a chromosome abnormality, where one piece from the short arm of chromosome 18 is missing.

We saw specialists to tell us more about this syndrome. They gave us the worst case scenario as to how my child could look and all the information given, was in latin names like: hypotonia, microcephaly or pectus excavatum. This was very confusing to us.

I was crying a lot. I even didn’t want to accept Jasmin. I was devastated. “Please!! I don’t want her.” My Husband was a huge support for me. He was always looking forward and not backwards.

I started my own investigations and found some good Information on the internet – The Chromosome 18 Registry & Research Society, San Antonio in Texas, USA. Roger, our son, helped join the “18p Yahoo Group”. This Support was, and still is, helpful. I printed out some Information from them that would help Jasmin’s doctors. My Local Area Coordinator came along too and has done his best to help us.

I read a lot about the Syndrome on the internet and I came to a stage where I had to stop. Jasmin had episodes of unresponsiveness/fits and she continues to have these infrequently. They stopped after we started with the growth hormones and that was when she was three years and 9 months old. We also had occupational, physiotherapy, as well as speech therapy at Andrea Way, which is an early intervention centre.

We learned Makaton when Jasmin was three, because she was still non-verbal at that stage. When Jasmin was four years old she went to Carson Street Pre Primary Special School. We were provided transport by bus to and from home. I still can see in my mind, her leaving in the mornings. When she was five years old she went to Kindergarten at the Language Development Centre, and, as well as continuing with Carson Street Pre Primary School. She started to talk a few words! Eventually, we even could stop with the sign language!

After one year, Jasmin could not continue at the Language Development Centre because her speech problem was too severe. We then were getting help through the state Disability Services. We enrolled Jasmin in a private school where she was did her Pre-Primary Year and she was still continuing at Carson Street as well. In 2007, we enrolled Jasmin in a Government School where she repeated Pre-Primary. We were funded for 80% for a teacher’s aid. She was doing so well that she didn’t have to continue at Carson Street. She was getting more help in a Government School.

All went well. I was happy to see Jasmin growing up with “normal kids” and her peers were great. But, when Jasmin was in Year 3, we noticed that there was a significant gap between her and her peers. She was still struggling to count to 10, while her friends were doing timetables and so on. I then visited the Education Support Centre and within a few weeks she was in a new school again. I was on the School Council at Jasmin’s school and being involved in meetings as much as I could.

Jasmin is now 19 years old with stable health. Canberra opted to stop giving her growth hormone three years ago once she reached a height of 1.5 meters. Since Jasmin stopped her injections, I was quite surprised that we didn’t notice any major changes in her. Jasmin has also grown about 6cm in the past four years, which was great to see.

Four years ago Jasmin was prescribed oestrogen, as she doesn’t produce much of the hormone naturally. At 17 years old she had her first period and we were able to control her cycle though the use of ‘Ralovera’.

I believe it is my destiny to help my family, especially Jasmin, to become independent and to have a secure future.
You never know what is around the corner. I am very blessed that I have a good husband. The problems are getting bigger and bigger. Marco respects me for what I am doing. I will keep my eyes and ears open to help Jasmin along.

That’s my purpose here and I love it.