Let’s help realign little Mateusz’s legs!

Mateusz Bednarczyk was born on 16th July 2011 in Dublin, Ireland, with congenital defect of his left lower limb. His left leg is circa 4 cm shorter than the right one, due to fibular hemimelia. Also, his left foot is smaller and has only four toes. The only chance to get the leg length even and his foot aligned properly is a surgery in Dr Paley’s clinic in the United States. The cost of the surgery is nearly 100,000 USD (350,000 PLN).

How can you help?

Description of the disease

Information on Mateusz's disease

Little Mateusz was born on 16th July 2011 in Dublin, Ireland. We realized that he has a defect only after he was born. On the day of his birth, in the evening, we noticed our son is missing one toe. A few moments later we also noticed his left foot was slightly smaller and the leg slightly shorter than the right one. Mateusz was given 10 points on the Apgar scale, not one person among hospital staff noticed the defect. We were completely shocked. Back home from the hospital, we started looking up some information on consultants in Poland and in the whole of Europe, hoping to find someone who could help us diagnose this defect. Browsing through details on paediatric orthopaedic surgeons, we came across some specialists from Cracow and Poznan, Poland. They managed to help us by giving an accurate diagnosis: Mateusz has the mildest possible type of fibular hemimelia. Mateusz has all typical signs of the disease: four toes, fibula and tibia equally long, a mark on the leg. Treatment options we were told about varied vastly, from preventing the good leg to grow normally, which might result in equal length of the two legs in the future, to possible surgeries when Mateusz reaches the age of 16 plus.

 

One bright day, Mateusz’s dad saw light at the end of the tunnel: he found the name of a specialist who helped a child with a similar defect before. It was Dr Dror Paley from Paley Advanced Limb Lengthening Institute in Florida, U. S. Having read some relevant information, we decided to send him and e-mail. The reply came really fast, on the very same day. We were exchanging e-mails for a while and, eventually, decided to make an appointment. We met Dr Paley on 19th April 2013, in Athens, Greece; Mateusz was examined, as were all his radiographs.  Dr Paley explained to us what this disease is, what treatment is available and what costs we will have to bear. He then prepared a report of the examination, which you can download below (both the original report in English and translation into Polish).

 

Dr Paley predicts that when Mateusz stops growing, his legs may have discrepancy in length of approximately 8 cm. Therefore, our son will require two surgeries. The first one is to be done when the difference in leg length is about 4 - 5 cm (in 1.5 – 2 years’ time), and the second one when he is 12-14 years old (to align the limbs). During the first surgery the leg will be lengthened, the foot realigned and a bone aligning device will be fitted.

 

As of today, our biggest concern is the cost of the first surgery, which was estimated at 100,000 USD (about 350,000 PLN); on top of that we will have to pay for the flights and the stay in Florida for Mateusz and one of us.
Below you can download the cost estimate for the surgery itself and for physiotherapy, prepared by Dr Paley Clinic’s staff on 29th April 2013.

 

As you may notice, the expense is huge. This is why we dare to ask for your help. We kindly ask you to donate even the smallest sum of money.
We strongly believe, that, with your help, we will manage to collect the sum required.
For detailed information on how you can donate funds, please click How can you help?

 

 

We thank you from the bottom of our hearts.
Edyta i Ɓukasz Bednarczyk
(Mateusz’s parents)

 

 

 

Below please find a link to Dr Paley’s lecture on the disease our son is suffering from
http://www.limblengtheningdoc.org/fibular_hemimelia_lengthening_reconstruction_surgery.html

Downloads

» Cost Estimate

» dr Paleys - Consultation

Contact form »

Contact by phone to parents Mateuszek:

00353 872277676
(Edyta - mom Mateuszka)

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