Help Alicja touch & hear the world

Our little girl Alicja is very unique. She suffers from a severe form of CHARGE syndrome that, among other health issues, has left her nearly totally deprived of all five senses. She was born totally deaf, with very limited vision in only one eye, no sense of smell and without the ability to enjoy food because she needs to be artificially fed. Because of physical disability, she is also very restricted in exploration via touch.  Additionally, she has a severe right leg malformation which, while part of her syndrome, only occurred in CHARGE a couple of times worldwide. She is our brave little original.

(PL)
Alicja ma 9 lat i kilkanaście poważnych i rzadkich wad wrodzonych (zespół CHARGE). Mimo złych prognoz lekarzy nie poddaliśmy się. Szukaliśmy specjalistów na całym świecie. Nasza córeczka miała nigdy nie usłyszeć, a słyszy. Miała nigdy nie stanąć na własnych nogach, a chodzi. Niestety w czerwcu tego roku czeka ją już szósta operacja za granicą. Zrekonstruowana cztery lata temu nóżka krzywi się i wymaga jak najszybszej korekcji. W przeciwnym razie Alusia może stracić możliwość chodzenia. Za leczenie będziemy musieli zapłacić sami. Koszt operacji i miesięcznego pobytu w USA wyniesie co najmniej 30 tys. USD. Do tego dochodzą koszty pooperacyjnej rehabilitacji w USA i w Polsce. Bardzo prosimy o pomoc dla naszej córeczki. Więcej informacji na www.alicja.org Z całego serca dziękujemy! Rodzice Alicji

(EN) We still remember how devastated we felt to see our baby fighting for her life as she underwent lifesaving heart surgery at the age of three weeks. We also remember how worried we were for her future. For the first couple of months of Alicja’s life, doctors suspected that she would be totally incapacitated with very limited contact with the world. We couldn’t imagine this kind of future for our first, longed-for baby.


Thankfully, not all these dark scenarios became facts. Despite many anomalies in her functioning eye, Alicja could see better with it that we had initially thought. Results of tests were awaited anxiously to see if Alicja would be a suitable candidate for a Cochlear Implant which would enable her to hear. Unfortunately, the news was devastating. Specialist tests showed that Alicja had a total absence of cochlear nerves; an extremely rare type of hearing loss that, according to our doctors, couldn’t be improved with any device.

Thanks to intensive therapy, Alicja learned to sit at the age of 18 months and we hoped that our dream of seeing her on her own feet could one day become a reality. But all orthopedic doctors who had seen Alicja had agreed that there was no way to reconstruct Alicja’s deformed leg and it would need to be amputated through the knee so she could walk with a prosthesis. We couldn’t imagine how our child with impaired balance and extremely limited vision would learn how to walk on an artificial leg.

This is when we decided to move mountains and look for specialists worldwide. Before Alicja turned 5 years old, with help from many wonderful people who have donated to her treatment, we have managed to achieve what seemed impossible. Firstly, we took Alicja to Italy where she received an Auditory Brainstem Implant that gave her basic hearing. We then found a specialist in the USA who has reconstructed her deformed leg in a series of three major surgical procedures.


Today, Alicja is a happy eight year old little girl who, despite many challenges, continues to learn new things and to amaze us. She loves her special school and her little sister. But what she loves most in the whole world is walking (with just a little support). Walking has helped her to explore the world through touch which has made a huge difference in her development.  As for hearing, it’s good enough to allow her to recognize many familiar sounds. She also recognizes some words without lip reading including vowels. However, it’s not good enough to recognize her mom’s voice so only dad can do her therapy.


Unfortunately, new medical challenges are awaiting us from the very beginning of 2018. Firstly, for the past 12 months Alicja’s reconstructed knee has been twisting and the angle is becoming more acute every month. She feels intense pain while walking. Our doctor from the USA has told us that she urgently needs corrective surgery within the next six months. Otherwise, she will lose her ability to walk and the twist may become irreversible.

Secondly, we have recently learned that Alicja’s diagnosis of total absence of hearing nerves wasn’t correct. New investigations have shown that she has a hearing nerve on the non-implanted side. Therefore, it may be possible to insert a cochlear implant, which would give her hearing on both sides. We need to avail of this opportunity especially as there is a likelihood that Alicja’s Brainstem Implant may fail one day. Alicja is also at a very high risk of losing her sight. When we think that one day she may become totally deaf-blind, it brings back all these feelings of despair from the first days of Alicja’s life. The cochlear implant would also maybe give her a possibility to finally hear her mom’s voice. We have made contact with a world famous doctor from Ankara (Turkey) who has accepted her for additional tests and probably Cochlear Implant surgery as early as at the beginning of February 2018. There is no time to lose as Alicja’s ability to benefit from the implant rapidly decreases at her age.

Unfortunately, our local doctors have no help to offer for these two issues to our very brave, unique girl whose conditions can only be treated by very specialized doctors. We have no other choice but to raise funds once again. We need 30 thousand euro by the end of January 2018 and another 35 thousand by the end of May (65 thousand euro or 75 thousand USD total).


Please don’t allow Alicja to lose her ability to walk and discover the world through touch! Please don’t let her become totally deaf-blind one day! Please help her to hear her mom’s voice! Please donate!

www.facebook.com/Alicja-CHARGE-208713382478927

www.alicja.org

Donations

  • Brigitte Hickey 
    • €20 
    • 13 mos
  • Drielle Silva 
    • €10 
    • 13 mos
  • Anonymous 
    • €10 
    • 14 mos
  • Anonymous 
    • €100 
    • 14 mos
  • John Buckley 
    • €200 
    • 14 mos
See all

Organizer

Alicja Nowicka 
Organizer
Cork, IE
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