Help Alicja to hear

Help Alicja to hear!

Dear Friends,

This is the watchword we start the New Year 2012 with. A new opportunity arose just three weeks ago (the end of December 2011), that could allow our little girl to hear for the first time.

As you already know, Alicja was born with not only external and internal ears malformations, but she is also missing both her hearing nerves.

Since our daughter was diagnosed with profound hearing loss at the age of 3 months, we had hoped that a cochlear implant (CI) would be an option for her. A cochlear implant is a widely used device proven to restore hearing in deaf children and a surgery to insert a CI in the child’s inner ear can be performed in every European country. Unfortunately, a detailed MRI of Alicja’s head was carried out in Dublin in March 2011 which showed a total absence of both her hearing nerves. This diagnosis dashed our hopes. Without hearing nerves, which are the channel that transfer sounds from the ear to the brain, the cochlear implant is not going to work. The consultant in Dublin told us that day “There is nothing we can do; sign language will be the only option to communicate with your child”. But how does one teach sign language to a child who is almost totally blind? We were devastated.

Suddenly, great news came our way a couple of months later. There is hope for Alicja’s hearing. Technology is developing, well done doctors, well done researchers!

Only less than a 100 children worldwide have so far received a hi-technology device called Auditory Brain Stem Implant (ABI). This small number is not surprising though as it happens extremely rarely that a child is born without hearing nerves (only 6 children have been diagnosed with this type of deafness in Ireland so far). However, many adults who went deaf due to illness or injury damaging the auditory nerves have received an ABI which restored a part of their hearing abilities. The ABI uses similar technology as the cochlear implant, but instead of electrical stimulation being used to stimulate the cochlea, a small chip is inserted into the brain stem of the recipient to stimulate the hearing cells (cochlear nucleus) present in the brain.

The most experienced doctor in implanting children with ABI is Prof. Vittorio Colletti from the University Hospital in Verona (Italy). This doctor has successfully implanted 59 children so far while 29 of them had significant associated disabilities, which included children with CHARGE syndrome and vision problems.

Prof. Colletti reviewed all Alicja’s clinical documentation prior to our visit in his clinic in Milan (Italy) on the 17th of December 2011. He confirmed bilateral lack of hearing nerves and he strongly advised to perform a brainstem implant on our daughter. The surgery costs 60 thousand Euro to which amount we have to add travel and over a month accommodation cost in Italy. We will also have to fund follow up trips to attend appointments in Verona every 3 months for the next 2 years.

And then, everything started to happen so fast. Just after the New Year’s Day we received a phone call from professor Colletti’s assistant who said, that the beginning of February 2012 will be the only time this year that Professor can gather all his team. We will have to be in the hospital in Verona on the 1st of February already for pre operation tests and, if everything goes well, the implantation will take place on the 6th or on the 7th of February. Fortunately, the Italian hospital offered to allow us to pay this crazy amount of money in stages.

We know this is the last chance for Alicja to hear (the implantation doesn’t make much sense if we do that after the child turn 3 years old) we decided to go, no matter what. While Alicja’s well-being and safety is our main concern at the moment (this is after all a brain surgery), we are still worried where we will be able to get such an amount of money, to enable us to refund the hospital in Verona.

Thanks to your donations and fundraisers, we currently have 9,586.77 euro on Alicja’s fund which is enough to pay the first stage of our Italian surgery fees. However, we will need to fundraise much more. Additionally, the time to do the leg surgery in the USA is approaching (ideally we would like to do that at end of this year).

That’s why we ask you to please forward our website (www.alicja.org) to your friends and family, maybe someone will be able to help. There is a donation poster on the website that you can download and hang somewhere (Print Donation Posters).

We will keep you updated on our difficult trip to Italy once we get over the worse stage of this.

We hope one day Alicja will be able to thank all of you herself…

Anna & Radek (Alicja’s parents)

- Print Donation Posters -

If you want to help Alicja, please donate:

You can also transfer your money to the following bank account number:

Irish Account:

Anna Nowicka Radoslaw Nowicki RE: Alicja's Treatment Account

Bank of Ireland

Account No: 61636846

Sort Code: 90-27-92

International Transfers:

IBAN No: IE45 BOFI 9027 9261 6368 46

BIC No: BOFIIE2D

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