Alicja's story

IMPORTANT:

SAVE ALICJA'S LEG FROM AMPUTATION !!!

ALICJA CAN HEAR NOW!

My name is Alicja and this is my story.

My parents met a long time ago. This is their first picture together:

New Year’s Eve 1995

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.

In July 2008, my parents got married. They had a beautiful wedding.

Wedding 2008

And then, they went on their honeymoon.

Indonesia 2008

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.

I was very happy in my mummy’s tummy. You can see it on my pictures:

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 any pictures.

Many difficult days started then, full of medical exams followed by very lonely nights.

I 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 health.

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 has 14 different birth defects:

complex heart defects (she had her first heart surgery at the age of 3 weeks; she may have two other heart surgeries in the future),
total hearing loss (lack of hearing nerves),
outer and inner ear malformation of both ears,
coloboma (hole in the structures) and at least 50% of optical nerve damage in both eyes
eye lid problems (ptosis of the left eyelid and incapacity of closing or blinking the right eyelid)
balance problems, bilateral semicircular canal aplasia (absence of balance organs in both ears)
retardation of growth and physical development,
paralysis of some of the facial nerves and facial asymmetry,
severe swallowing problems (Alicja can not swallow and she is fed by a tube ),
partial vocal cords paralysis,
laryngomalacia (abnormality of the laryngeal cartilage),
abnormal airway that causes severe difficulties during general anaesthetic,
right leg malformation (club foot and absence of the right tibia, which is the main leg bone),
weakness of some muscles, for example of shoulder and spine muscles

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:

life saving heart surgery at the age of 3 weeks,
PEG tube insertion at the age of 11 months,
extremely rare brain surgery (Auditory Brainstem Implantation) at the age of 2 years and 9 moths to enable her to hear without hearing nerves

She also had many minor surgeries and examinations under general anaesthetic.

In the near future we are planning:

to provide Alicja with professional therapy, so she can develop her hearing skills,
to reconstruct her leg so we can avoid amputation and allow her to learn how to walk,
to repair both her eyelids; to allow vision development of the left eye and to avoid damage of the right eye,
to work on Alicja’s psychomotor development,
to teach her how to swallow,
to buy special rehabilitation equipment

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: