Our Stories
Gallery of Stars 4-2-08
Q & A What Families Think
Dr. Allanson Q & A
Order: Information about NS
Giving
Research
More Information (Links)

                   

  You can join the TNSSG group or our cause on FACEBOOK

This is Alessia De Ruschi

 alessia_leffe@hotmail.com

 Peia, (BG)

Italy

I am mom to Ilaria , a little NS angel who was born on 31 Dec 2004 and 1st January 2005 and died on 15 June 2007 for complications after asurgery to try to solve a persistent chilotorax. I started reading everything on the  TNSSG web site and subscribed the Noonan list when Ilaria was inthe Hospital and now I am still reading your e-mails, sometimes I also write you and I write directly to a couple of you. I love this support group because reading about other Ns children is quite reading about my Ilaria and it seems she is still with me.

  k, our story started with a very difficult pregnancy. I had a lot of nausea, problems to the legs, problems to the liver but above all I had too much amniotic liquid so I started to have contractions when I was 28 weeks pregnant. Doctors gave me some meds to stop contractions and I managed to take my pregnancy to 38 weeks when they decided to make my daughter to  born because still there were too much liquid. She was born on the night between 31 December 2004 and 1st January 2007, she was the first baby born in our province and the local news-paper published her photo.

She was so small and she did not want to eat, nurses forced her but she always refused till when she became blue, she had a respiratory crisis so they moved her to another hospital where there was the baby care division. Doctors discovered that she had an infection and moreover she had  2 ventricula defects and an atrium defect. She stayed in the hospital for  27 days, she had all the possible exams, doctors told us that she could have a lot of illness, but no one was the right one. When we bring her home they told us she just have small problems to her heart that could solve by themselves with growth. But she did not want to have milk, any kind of milk, any kind of baby battle. We were very worried but no doctors explained us anything. When Ilaria was 4 months old we took her to the cardiologist for her check up, but he saw a new problem: Hypertrophic miocardiophaty and stenosys of the pulmonar valve. He told us that perhaps she had Noonan syndrome and suggested us to go to the genetics. He also confirmed the Noonan syndrome because of her peculiar face. We started gathering information on internet, but here in Italy there are not much sites that explain this syndrome.
We were very worried, sad and alone.
At next check up (she was 5 months old) the cardiologist prescribed her a beta blocker 4 times a day. She had visits every 3 months and everything looked ok. She was a very smart baby, little eater , some delays with walking and gross movements because of ipotonia. But she started speaking very early. At 8/9 months she said her first words and at 13/14 months her first phrases. She loved listening stories and drawing. She had a very strong temper and it was very hard to tell her what she had to do, but I think that we 3 were great together.
Unfortunately on 18 April 2007 she had a very important respiratory problem and we took her to the hospital where doctors discovered a very serious chilotorax. We feated against it for two months with medicines and at the end she had to have a surgery, but something went wrong and a week after the intervention she became our little angel (15 June 2007).
Looking at her photos now I can see that she was a really happy child and this is what most of all make me serene. I know i have done my best considering her a very normal special little girl. (I was teaching her also English).
Now we are trying to have another baby even if by now we have not received yet any results about her and our genetic tests.
I really have to thank the TNSSG because in these last month I have learnt a lot of things about my Ilaria. Things that no doctor can explain. THANK YOU ALL!!!!!!!!!!!!!!

Here you are some photos of our little angel that will look over your children forever.