My name is Alicja
and this is my story.
They loved to travel together; they have visited many interesting places.Peru 2007
I hope that one day, when I
grow older, they will take me on a holiday somewhere very far away.
And then, they went on their honeymoon.
Just after my parents came
back home, they discovered I was there and that I was going to be born in the
spring. They were very happy. In October, on a scan, they heard my heart beat.
In December a doctor told them, I was a little girl, so they chose a name for
Me in March 2009
Me in April 2009
Mum and dad were caressing
me, talking and singing to me. I was going with my mum to the swimming pool and
on very long walks to the beach or to the mountains. We were regularly visiting
our doctor who kept looking at me and saying that I was a beautiful, healthy
little girl. My parents were so happy because they were going to see me soon. My
grandparents couldn’t stop offering me presents.
I was due to be born on
the 18th of April but I was feeling so well being with my mum that I was not in
a hurry to come out. My parents waited patiently for me; they have prepared my
room, my baby cot, cosmetics, clothes and toys. On the 27th of April doctors
decided to help me to be born.
The labour lasted many hours and that was hard for both me and mummy. At some stage my heart beat decreased so the doctor decided to help me to come out with special forceps. Hurray, here I was! The 28th of April at 9.01 pm I was already in my mommy’s arms and daddy couldn’t stop taking pictures. We were all so happy together. Here is my first picture:
My first picture – 28th of April 2009
Both mum and dad were so
excited that they didn’t realise my right leg was deformed. Doctor had to say
it to them. He also said that my cry was very weak, that I didn’t have sucking
reflex, that I had a closed eye and a deformed ear, that all this meant I might
be very ill.
Then, they took me away
from mummy and started to examine me. I remember my parents crying. I cried as
well, because I was alone and felt much pain from needles in my body.
Next day, doctor had a
serious discussion with my parents. He explained that I may be blind and deaf,
that I may never walk and never eat, that I may have heart and breathing
problems, that my brain may be damaged. He also said that I would remain in the
hospital for a long time.
That day daddy didn’t take
Many difficult days started
then, full of medical exams followed by very lonely nights.
couldn’t swallow, so the nurses have put a long tube threw my nose into my
stomach and they were feeding me this way with my mom’s milk.
Mum and dad were visiting me very often. They were cuddling me tightly but then, they were disappearing for long hours leaving me all alone.
Me with my parents - May 2009
Suddenly, I started getting weaker and weaker every day. One day, when I was three weeks old, an ambulance came and took me to a different hospital where I underwent heart surgery. Fortunately, it was successful. Well done, doctors!
Me right after the surgery – May 2009
After the surgery, I
needed loads of rest but eventually I started to feel much better. I was strong
enough now to be able to move my arms and legs, to suck my dummy and to hold my
parents’ fingers. I still wasn’t able to swallow but the nurses taught my mum
and dad how to feed me threw a tube. The doctor said to my parents that, even though
I’m never going to be healthy, they can take me home.
The 28th of July, at exactly three months old, I went on my first car trip with mummy and daddy. My baby room was all ready and waiting for me, with my baby cot, my clothes and my toys.
Me, just arrived home, the 28th of July 2009
That evening, at 9.01 pm,
my parents and my grandparents have opened a bottle of champagne and drank to my
And my story is really just starting now...
Alicja was born on the
28th of April 2009. At the age of three weeks she was diagnosed with CHARGE
syndrome. It is a very rare, genetic pattern of birth defects, which causes
damage to many of the affected person’s organs.
Alicja will always require frequent medical visits and continuous therapeutic sessions that can largely improve the quality of her life and partly cure her disorders. She will have to undergo many serious surgeries in next few years. Alicja continuously takes a few different medicines. She requires special medical equipment and 24 hours qualified medical care.
Alicja has spent her short life in different hospitals. She underwent three serious surgeries:
She also had many minor surgeries and examinations under general anaesthetic.
In the near future we are planning:
Alicja’s complex medical
needs put us under a huge financial pressure as not all kind of treatment is
covered by her medical card or private health insurance.
Our main goal is to raise money for Alicja's leg surgery that we plan for August 2013 (SAVE ALICJA’S LEG FROM AMPUTATION!).
Also, Alicja has been
offered physio and communication therapy by a foundation but the sessions are
not frequent enough for her complex needs and serious developmental delay.
That’s why she attends private physio and speech and language therapy as well
as other treatments.
Additionally, all her treatments require travelling to different cities and countries which is very expensive, time consuming and which makes a full time job impossible for at least one of us. All this is a huge financial challenge.
Thank you for everyone who supported us by donating towards Alicja's treatment. Please continue to support our daughter. We hope one day she will be able to thank all of you herself.
If you want to help Alicja, please donate:
You can also transfer your money to the following bank account number:
Anna Nowicka Radoslaw Nowicki RE: Alicja's Treatment Account
Bank of Ireland
Account No: 61636846
Sort Code: 90-27-92
IBAN No: IE45 BOFI 9027 9261 6368 46
BIC No: BOFIIE2D
Copyright © 2009-2012 All rights reserved - Alicja Nowicka;
Website, Text & Photographs - Ania & Radek
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