Julia

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Julia before treatment. She was born with
bilateral fibular hemimelia.

**Translated from Polish**

Julia was born on July 24, 2013 with bilateral fibular hemimelia. Per Dr. Paley, “she had very severe fixed equinovalgus deformities of both legs, the right was worse than the left.” She has three toes on each foot and in addition, the tibia bones were bent and a lot shorter. After birth we were shocked seeing her deformities. Doctors in Poland proposed amputation and prosthesis for the rest of her life. We never accepted that. After Julia finished 1st year we were determined to look for help, and on the internet we came across Antonina Wieczorek’s story whom Dr. Paley already operated and she was born with the same deformity as Julia. They have shared a lot of information with us and we felt much more educated about our daughter’s deformity. They gave us Dr. Paley’s contact info from the United States.

We wrote to Dr. Paley and sent him Julia’s x-rays and 2 days later Dr. Paley wrote back to us that he will be more than happy to operate on Julia and briefly wrote up a treatment plan. He added; “Julia will be running, jumping and doing sports.” We were extremely happy and couldn’t hold the tears back. His email changed our lives.

In October of 2014 Dr. Paley was in Poland where we personally met him and received consultation on Julia’s deformities. He took his time in evaluating her and reviewed her x-rays by presenting the exact treatment plan. We returned with hope and high spirits. After a few days we received cost estimate of treatment.

We did not give up and started raising money for Julia’s operation. We were not alone, people have huge hearts in our city in Poland, and Polish communities from all over the world have joined in, in support of our raising funds for Julia’s surgery. We experienced so much good and people who have lifted our spirits. There were moments of doubt, because time was running out and we didn’t have enough money to cover the surgery. We were looking for help everywhere, even in the Vatican – Pope Francis. I wrote a letter to him asking for any support not expecting a response. It was a huge shock when we learned that Pope Francis would contribute to the rest of the amount for the operation.

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Julia and her mom with Pope Francis

In February 2015, we began to plan our trip to the United States for Julia’s surgery.

On May 18, 2015 we packed our suitcases and flew on a long and unknown journey to West Palm Beach, to Dr. Paley and the Paley Institute.

Julia’s first operation took place on 27th of May 2015. It was very long, lasting approximately 10 hours. It was the most difficult period for us, but we knew that she was in the hands of the best surgeon in the world. That night after the surgery Dr. Paley came to us happy to say that the operation was very successful. We were extremely pleased and reassured.

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Julia during recover and after surgery with Dr. Paley

After 5 days we left the hospital and started intensive rehabilitation. At first it was tough, Julia’s pain during exercise, cleaning wounds and pins at nighttime for infection. As a mother my heart was breaking watching my child suffering. Julia has conquered it all. She has been very brave. After approximately 2 months from the moment the fixators were on Julia, started to walk independently, although they were large and heavy in relation to her small body. After approx. 5.5 months during the second surgery the fixators were removed and Julia was in a cast for 2 months.

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Julia during treatment at the Paley Institute

Julia’s first words after removal of her casts were; “Mom, I have two legs” that were straight and equal. Although there were scars from the pins etc., to us they were the most beautiful legs in the world. Finally after 2.5 years since her birth Julia for the first time was able to put on shoes and stand on her own two feet. On the second day she made her own first two steps. After treatment ended we stayed in West Palm Beach 2 more weeks for intensive physical therapy and after 8 months returned home where everyone waited for us. We were happy that Julia was going back home with healthy, happy two feet.

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Julia after limb lenghtening, deformity correction and removal of the external fixators. She is running and playing like all the other kids, on her own two feet!

We have no words to express our immense gratitude to Dr. Paley, the entire staff of the clinic, and the therapists who worked with Julia in the pursuit of self-reliance.

We are very thankful for learning about Dr. Paley, who has vast knowledge and experience in the treatment of these types of deformities. His enormous work and commitment made it a reality that our daughter is walking, running, jumping and enjoying her childhood today.

This is not the end of Julia’s treatment, but we know that Julia is in great hands and everything will be fine.

Dorota
Lublin, Poland

**Original Polish Version**

Julka urodzila sie 24 lipca 2013r z bardzo rzadka wada obu nózek a mianowicie brakuje w nich kosci strzlkowych, ma tylko po 3 paluszki w stópkach. Poza tym kosci piszczelowe byly wygiete i sporo krótsze. Po jej narodzinach bylismy w szoku widzac jej znieksztalcone nózki.

Lekarze w Polsce proponowali nam amputacje i protezowanie do konca zycia.Nigdy sie z tym nie pogodzilismy. Kiedy mina pierwszy szok postanowilismy szukac pomocy na wlasna reke. W internecie natknelismy sie na rodziców Antosi , która urodzila sie z taka sama wada jak Julcia. To od nich bardzo duzo dowiedzielismy sie o chorobie naszej córki. Dostalismy równiez namiary na dr Paleya z USA.

Napisalismy do niego e-maila , wysylajac RTG nózek Julki. Bylismy bardzo zaskoczeni , kiedy doslwnie po 2 dniach otrzymalismy odpowiedz. Odpisal nam ,ze jak najbardziej podejmie sie operacji Julli, krótko opisal plan leczenia. Dodal ,ze bedzie ona biegac , skakac i uprawiac sport. Nie moglismy powstrzymac lez szczescia.

W pazdzierniku 2014r dr Paley przylecial do Polski , gdzie osobiscie moglismy spotkac sie z nim na konsultacji. Dokladnie zbadal Julke obejrzal RTG jej nóg. Przedstawil dokladny plan leczenia. Wrócilismy do domu po raz drugi podniesieni na duchu.

Po kilku dniach dostalismy kosztorys leczenia. Troche nas zmartwil , poniewaz suma na nasze realia byla ogromna.

Nie poddalismy sie , zaczelismy zbiórke pieniedzy , poniewaz sami nie bylismy w stanie pokryc takiej kwoty.Przylaczylo sie do nas bardzo duzo ludzi o "wielkich sercach" zarówno w Polsce jak i Polonia poza jej granicami.Doznalismy tyle dobra i ciepla od ludzi , którzy podtrzymywali nas na duchu. Byly rwniez chwile zwatpienia , poniewaz czas uciekal a pieniedzy ciagle brakowalo. Szukalismy pomocy wszedzie , nawet u Ojca Sw. Franciszka. Napisalam do niego list o pomoc. Jaki byl dla nas ogromny szok , gdy sie dowiedzielismy ,ze Papiez dolozy brakujaca kwote do operacji.

W lutym 2015r zaczelismy zalatwiac formalnosci zwiazane z wyjazdm do USA na operacje Julii.

18 maja spakowalismy walizki i wylecielismy w daleka i nieznana podróz do West Palm Beach , gdzie operuje dr Paley.

Pierwsza operacja Julki odbyla sie 27 maja 2015r. Byla bardzo ciezka i trwala ok. 10 godz. Byl to dla nas najtrudniejszy okres , ale wiedzielismy ,ze jest w rekach najlepszego chirurga na swiecie.Na szczescie wszystko poszlo pomyslnie i doktor wyszedl do nas zadowolony z przebigu operacji. Bardzo nas to ucieszylo i uspokoilo.

Po 5 dniach wyszlismy ze szpitala i zaczelismyintensywna rehabilitacje.Poczatkowo bylo bardzi cezko , ból przy cwiczeniach , czyszczeniu ran , podkrecaniu srób, infekcje. Mi jako matce serce pekalo patrzac na cierpienie swojego dziecka. Jula zniosla to wszystko bardzo dzielnie . Po ok. 2 miesiacy od zalozenia fixatorów zaczela w nich samodzielnie chodzic , chociaz byly duze i ciezkie w stosunku do jej drobnego ciala.

Po ok. 5,5 miesiaca podczas drugiej operacji zostaly usuniete fixatory i na 2 miesiace zalozony gips.

Pierwsze slowa Julki po zdjeciu gipsu brzmialy: " mama mam nózki " a ukazaly sie nam proste prawi równe nózki. Chociaz w bliznach ale dla nas najpiekniejsze.W koncu po 2,5 roku swojego zycia Julka mogla wlozyc swoje upragnione bucikii stanac na ziemi na swoich stópkach. Na drugi dzien zrobila juz swoje pierwsze samodzielne kroki. Jeszcze 2 tygodnie zostalismy na Florydzie , gdzie byla kontynuowana rehabilitacja i po ok. 8 miesiacach pobytu wrócilismy do domu , gdzie czekala na nas steskniona rodzina.Bylismy szczesliwi ,ze Julka wraca na swoich dwóch nózkach.

Nie mamy slów aby wyrazic ogromna wdziecznosc do dr Paleya , calego personelu z kliniki , rehabilitantów , którzy pracowali z Julia w dazeniu do samodzielnosci.

Dziekujemy ,ze mielismy to zsczescie spotkac na swojej drodze dr Paleya , który ma ogromna wiedze i doswiadczenie w leczeniu tego typu wad. Jego ogromna praca i zaangazowanie sprawilo to ,ze dzis nasza córka chodzi , biega , skacze i cieszy sie dziecinstwem.

To nie koniec naszego leczenia , ale wiemy ze Julka jest we wspanialych rekach dr Paleya i wszystko bedzie dobrze.