Alicja can hear now!

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OUR "MISSION IMPOSSIBLE" – GETTING THE HEARING FOR ALICJA

VIDEOS

August 2012

Dear Friends,

We are happy to inform you that we recently reached one of Alicja’s treatment milestones. We took her to Verona (Italy) where she underwent brain surgery (Auditory Brainstem Implantation). Our two months’ stay in Italy in February and March of this year was a difficult time but it was worth all our stress and anxiety, all Alicja’s pain and all the money we paid. Our daughter, who was born without auditory nerves, is now able to hear.

Alicja was admitted to the Verona University Hospital on the 1st of February and she remained there for 4 weeks. She was initially scheduled to be implanted on the 7th of February, but she had severe, unexpected complications related to the general anaesthetic and, in order to save her life, the surgery had to be stopped. During the following week Alicja had many tests to find out whether she would be able to have the procedure. That was an extremely difficult time for us.

Thankfully, she was successfully implanted on the 14th of February. The long 8 hours that our little girl spent in the theatre on that day was a time of unbearable anxiety for us. But when the doctors came to talk to us with big smiles on their faces and said that the implantation had been successful, we felt so happy that we gave them all a big hug! Then we realized how special and symbolic this implantation day was: Alicja received her hearing on Valentine’s Day in Verona, the romantic city of Romeo and Juliet:-)

Alicja had to stay hospitalized for 2 weeks after the surgery and had daily appointments in the hospital for two weeks after that before her implant could finally be activated on the 12th of March.

Our little girl surprised us a lot and brought joy to our hearts when she smiled to the sound of our voices for the first time in her life on the activation day. All 12 electrodes were successfully activated for Alicja which is a brilliant result. This Auditory Brainstem Implant activation made our daughter the first child from Ireland (and also the first Polish child) born without auditory nerves to have her hearing restored through brain surgery.

Unfortunately, this is not the end of our hearing treatment. Alicja has to travel to Verona every 3 months for the next two years for implant mapping. She also needs very specialized speech and language therapy to help her to make sense of the sounds she is hearing.

Upon our return home, we initially had serious problems organizing post implantation speech & language therapy for Alicja. She is the first ABI user in Ireland. Also, she is not a patient of the Cochlear implant clinic at the Beaumont Hospital any more which is the only place in Ireland that provides the specialized post implantation therapy. We have been removed from their patients’ list after we decided to take Alicja to Italy to implant her with an ABI against their advice. According to them; Alicja is and will always remain deaf.

Alicja finally started Audio-Verbal therapy in the foundation that she has attended for her therapy since she was 6 months old. Our speech and language therapist has set up a hearing therapy program for our daughter and she is doing as well as she can even if Alicja is her first patient with a cochlear or a brainstem implant. However, we are still worried that 30 minutes of therapy a week will not bring Alicja any significant benefit.

We started to search for something more appropriate to her needs and, in July, we took Alicja to Poland to attend a two weeks’ hearing camp organized by the Deaf Association of Poland (the camp costed us around 1,500 euro + travel expenses) Alicja did very well learning how to listen and understand together with other children of her group who were all around one year old. All of them had significant hearing impairment but no other developmental issues. We were very proud of our daughter:-) We came back home with many useful tips and a much clearer idea on how to train her hearing.

As soon as approximately one month after implant activation, we noticed that Alicja has started to realize that she can hear. She became much more aware of what happens around her, she loved making noise banging with different objects, she started to be interested in watching cartoons and also started to make different sounds. However, we still didn't have obvious signs that she is hearing. After coming back from the hearing camp, we saw many signs of improvement. Alicja started to react to her name and to mum’s and dad’s voices. She turns when she hears familiar musical instruments, and she “plays” them when we give them to her. We can now draw her attention by talking to her. She removes her implant when she is tired or when she is in a loud environment. All these signs are still not constant but we hope they will become more constant and obvious in time.

We wish to thank everyone who has helped us to reach our goal by donation money to Alicja’s treatment account. It is impossible to list all the names here but Alicja would never hear without the support of all these wonderful people. We wish to give a special thank you to those who have organized many great fundraising events: the Starwood Community Outreach Committee (supported by the HR Director Ms. Irena Santos and the HR Manager Ms. Tara Moloney) , The Crane Lane Theatre, My Cork Polish Association, Oficina da Capoeira, the GlaxoSmithKline Philanthropy Committee and The Westin Europa & Regina in Venice. We also want to thank the main organizers of the events: Irene, Tara, Aoife, Jolanta & Nina (from Starwood Hotels and Resorts), Kate (the director of The Crane Lane Theatre), Kamila (from My Cork Polish Association), Nina Cabaca (from Oficina da Capoeira), Kasia (from GlaxoSmithKline) and many others who were involved. Thank you from all our hearts!

We did what seemed impossible: Our child, who was expected to remain totally deaf for all her life can now hear. Now, we prepare to do other difficult tasks aiming to give Alicja an opportunity to live a better life. Our next step is to take our daughter to Florida to reconstruct her leg at the beginning of next year. This surgery will cost much more than the one in Verona: 150 thousand USD + flights and accommodation.

Therefore, we wish to invite you to participate in the next fundraising event for Alicja (Dance Alicja, dance!). To read more about the leg reconstruction, please see the link below (A unique opportunity to repair Alicja’s leg; consultation with Dr Dror Paley)