Feedback from our patients

Maja (Lublin, Poland)
(translated from Polish) Maja was born March 23, 2014 (40th week of pregnancy) with Tibial Hemimelia. Maja was born with right tibial hemimelia with a completely dislocated patella, total tibial aplasia, duplication of femoral condyle, dislocated foot and ankle in equinovarus, and two-toed foot. The other leg is completely normal. We knew of the birth defect since early in pregnancy. Soon thereafter when we learned of the defect, we saw the Marcin Wrona segment (on Polish TVN) called "Miracles over the Seas" featuring the Paley Institute clinic and the outstanding specialist in children's bone reconstruction, Dr. Dror Paley. That TV report directed our further actions and what we wanted to achieve. We knew we wanted Dr. Dror Paley to operate on Maja and only him. Unfortunately, in Poland they proposed amputation and that was out of the question for us. After Maja's birth we emailed Dr. Paley x-rays and received a quick response, followed by a consultation in 2014, in Milan. Dr. Paley proposed the details of the treatment and told us that Maja would walk again. We applied to the NFZ (Polish Fund) and very quickly our application was approved. We got here in September 2015, and Maja's first surgery was September 22, 2015 followed by one on February 2nd and March 15th, 2016. One week after the first surgery Maja started to walk and now June 9th, 2016 fixators will be removed and we are so very thrilled and excited. We are very pleased with the process and method of treatment here at the Paley Institute. According to our belief Dr. Paley is the the best orthopedic surgeon in the world. He knows what he is doing, we trust him, and we know he wants the best for our daughter. We like the fact that his staff/personnel is highly selected, it’s something you don't see at every clinic. In addition, we are sincerely thankful for Ms.Bernadetta Soja, International Patient Coordinator. Not only does she help us with everything at the Paley Institute but all other matters outside of our daughter's treatment. She's been a true support and we are grateful she is here for us. (original Polish) Maja urodzila sie 23 marca 2014 roku w 40 tygodniu ciazy, z wada rozwojowa prawej nózki, zwana Tibial Hemimelia, która zdarza sie niezwykle rzadko. Maja nie ma w prawej nodze kosci piszczelowej, dwóch kosci sródstopia i palców II, III, IV. Natomiast kosc udowa ulegla rozdwojeniu w dolnym odcinku, a staw kolanowy jest „zwichniety”. Noga byla zgeita pod katem 90 stopni. O wadzie Mai dowiedzielimy sie w 4 miesiacu ciazy, podczas standardowego badania usg. Niedugo potem zobaczylismy program w polskiej telewizji TVN: reportaz Marcina Wrony o "cudach zza oceanu", czyli klinice dr Paleya, wybitnego specjalisty w dziedzinie rekonstrukcji kosci. To ukierunkowalo nasze dalsze dzialania. Szukalimy dalszyvch informacji w Internecie. Wiedzielismy ze w Polsce grozi Mai tylko amputacja nozki, wiec nie bylo sensu leczenia Mai w Polsce. Zaraz po narodzinach wyslalismy zdjecia rtg nogi Mai do dr Paleya. Odpowiedz przyszla szybko: dr Paley napisal ze zrekonstruuje noge Mai i Maja bedzie chodzic na wlasnych nogach. W czerwcu 2014 roku na konsultacji w Mediolanie dr Paley przedstawil szczegoly leczenia Mai. Zlozylimy wniosek do NFZ (polska sluzba zdrowia) o sfinansowanie leczenia Mai w Paley Institute. Decyzja byla pozytywna. Pierwsza operacja Mai odbyla sie 22 wrzesnia 2015 roku, kolejne 2 lutego i 15 marca 2016. Dr Paley wyprostowal noge, zrekonstruowal kolano, polaczyl rozdwojona kosc udowa, zrekonstruowal stope. Maja juz tydzien po pierwszej operacji zaczela chodzic z fixatorem na nodze. 9 czerwca zostanie zdjety fixator, ku naszej wielkiej radosci. Jestesmy bardzo zadowoleni z przebiegu leczenia w Paley Institute. Dr Paley to najlepszy ortopeda na swiecie, dokladnie wie, co robi. Ufamy mu. Dba o dobro naszego dziecka i zatrudnia wyselekcjonowany personel. Jestemy mu bardzo wdzieczni zwaszcza za zatrudnienie na stanowisku koordynatora miedzynarodowego i tlumacza P. Bernadety Pieklo - Soja, ktora sluzy nam pomoca nie tylko w Paley Institute, ale pomaga w wielu innych sprawach. Jest dla nas ogromnym wsparciem. Agnieszka Lublin, Poland
Sean (Ireland Congenital Femoral Deficiency)
Our son Sean was born in March 2004. His right femur hadn’t grown. The only options given to us in Ireland, and indeed by many doctors in the E.U, were to amputate his right foot and/or rotate his right leg. No one told us about limb lengthening. We researched ourselves and thank God every day that we found Dr. Paley. Sean had his first lengthening in November 2006, aged 2. He gained 8 cm of new femur bone. He walked independently for the first time in October 2007. Now there is no stopping him, he is walking, hopping, and acting like any 4 year-old. He will need further lengthening operations during the next few years, but he will continue to walk on his own two feet! Few people possess a skill or talent that really makes a difference to another person’s life. Dr. Paley has the expertise to do exactly this and has changed the lives of so many children. We’re very grateful that our son is one of them. David and Catherine
Nazanin (Urmia, West Azerbaijan Province, Iran)
What I write for you is not consent, it is a letter of introduction to the great men that have great efforts to serve humanity and bring hope to the lives of disabled people. I am Shahram from Iran. My second daughter was born in third of January 2008, with congenital anomalies, Fibular Hemimelia, and the third day after birth I took Nazanin for an examination and consultation to orthopedic specialist in our hometown (Urmia). At the first examination, one of the doctors said the only remedy is amputation. I returned home with great sadness, but I did not disappoint. Then we went to Tehran and during 9 months we consulted about 27 orthopedic specialists and subspecialists. Most of them offered amputation, some of them said we cannot work currently, after 4 years let’s see what can be done. Until a young orthopedic doctor, Mr. Motalebizadeh, said I can solve the problem. Nazanin from 9 months to 29 months was treated. After five surgeries she endured great pain, severe infections and much travel to Tehran. Practically none of her foot deformities were resolved.   I tried a lot to find a treatment outside the country until I met Dr. Paley through the Internet in winter 20 11. He announced readiness to treat Nazanin’s foot immediately, after reviews of x-rays. High cost of treatment, her treatment was impossible for us, until Dr. Paley and Mrs. Garner returned smiles and hope to our life by eliminating 70% of the cost and the remaining costs paid by Child Foundation Charity. After a very difficult process of obtaining a visa, on January 26, 2012 Nazanin was operated by her doctor's surgical team for 9 hours. The behavior of Dr. Paley and staff of his institution was very good and enjoyable, the attitudes and behaviors that in our country will never be experienced. During the surgery, a kind lady named Candice informed us of her status regularly, and after the end of surgery, despite the exhaustion, Dr. Paley came forward to us and explained what had been done and the result is satisfactory. After surgery at Children's Hospital, Nazanin was hospitalized for 5 days. Care doctors and nurses at Children's Hospital of St. Mary’s were very accurate, and their behavior was very good and full of kindness. After her release from the hospital physical therapy of Nazanin began immediately, and it was continued for 73 days. I have to thank her therapist, Carolina, because she worked with great care and high expertise so that her behavior was like a second mother to my daughter. Her efforts were very helpful and Nazanin’s recovery was very quick. After the end of lengthening schedule, we returned to our country and after 3 month break then we came back to America again on August 9. On 29 August of 2012, Dr. Paley, during a 2 hour surgery, separated her fixator and 8 plates, and her leg was cast. After 2 months of her cast, it was opened. I will never forget it when they opened the plaster we saw a healthy and beautiful leg that had no resemblance to the previous leg. Carolina worked on my daughter’s leg for 1 month again, and now we are in Iran. Nazanin can play with her friends, such healthy children and like them runs, skips, and she is very happy. We owe all of these to a great man and a gentleman, Dr. Paley. Here it is necessary to appreciate all of personals and management of St. Mary's Hospital and Dr. Paley’s institution and Child Foundation Charity such as: Mrs. Toni Garner Servando, John, Caroline, Ali, Candice, Anthony, Feran, Tom, Stella, and other friends I sincerely thank. Dr. Paley and friends: Nazanin embraces her leg every day and says: “I love my new leg!” Shahram Urmia, Iran
Liddy (Achondroplasia)
When telling most people my story, I tell them to imagine me standing in front of them being around 3'8". That is what life would have been for me if I hadn't encountered Dr. Paley and underwent limb lengthening. Because of Dr. Paley, I walked out of the Paley Institute a tall 4'11", thanks to Dr. Paley and his unbelievable staff. My parents had no information about Achondroplasia when I was born. They spent countless days and nights researching and figuring out what life would be like for their first child. After being told I would have to undergo many correction surgeries to live a painless life, Dr. Paley's name was referred to my parents from our pediatrician who had heard about him. After researching Dr. Paley, my parents and I made the trip to West Palm Beach, Florida, from Kansas City to receive more information. Waddling into the clinic with extremely bowed legs and a very curved spine, we were ready for answers. Since I was around 9 years old at the time, I was shocked at the metal devices on patients while waiting in the waiting room. After spending hours at the clinic, receiving answers and information about a life-changing procedure I could receive, my parents and I determined it was best to receive treatment from Dr. Paley. Going into the first limb lengthening of my femurs, tibias, and fibulas, I wasn't entirely sure what I was getting myself into. I am not going to lie, the first few weeks were very difficult with the physical pain and getting used to external metal devices. After moving my life to Florida for a few months, I left the institute four inches taller, with straight legs, and some of my back lordosis fixed. Coming home and being able to reach the sink, put on my shoes, and touch the floor with my feet are all indescribable experiences. After those feelings, I knew I had to undergo another limb lengthening to make my life even more accessible. With my second limb lengthening, I gained six inches on my legs. Going into the second procedure, I knew what was ahead of the road and was mentally prepared. It isn't easy not being able to bear weight for several months, attend physical therapy daily, or the physical pain you deal with while going through this journey. With a few correction procedures in the process to make sure everything is done perfectly, I left Florida as a confident 4'11" teenager. Now that my legs were lengthened, I knew my arms needed to undergo limb lengthening as they were now above my hips. Hearing everyone say the arms are "a piece of cake," I believed them and can now say the same. Even having to go back into surgery two months after the installation of my upper arm fixators, I had to go back into the operating room and receive two additional fixators on the lower part of my arms because my bones started to curve. After receiving additional fixators that weren't planned, I can still say the arms are the easiest part as you are able to walk and still function in day-to-day life. This time, I left Florida with five additional inches on my arms, making my body proportionate and very functional. After coming back home and being able to hop in my bed without a stool, participate in normal activities all my friends were doing, and not being stared at as much in public, made the limb lengthening process 100% worth it. Never did I think that walking into a clinic at the age of nine years old, thinking it was just a normal, quick doctor's appointment, did I think one man could change my life for the absolute better. Never did I think a group of doctors, physical therapists, and staff would become a second family and that Florida would quickly turn into a comforting home to me. Never did I think I would be able to meet people from all over the world who have the same condition as me and I would call them some of my best friends. Never did I think that I would have a journey so special to me that I can tell my story with and be so passionate and proud of. Never did I think Dr. Paley would help change my life, make it more functional, and make me able to navigate a college campus on my own, climb mountains literally and figuratively, and make me more proud of the person I am today than ever.
Andrea (Venezuela - Fibular Hemimelia)

The Fisherman and the Shoes

I want to share a human story. In this convulsed world of ours things happen that teach us that love and happiness have not disappeared and that we must never lose faith that wonderful and generous people will always be around. Andrea, my first granddaughter, was born on September 24th 1998. Four months before she was born an echogram revealed a shorter right leg. The next month brought fear, tears, hope and lots of prayers. Two months before her birth I wrote a letter to Pope John Paul II’s secretary, Fr. Stanislaw Dziwisz, asking for the Pope’s prayers. He answered immediately telling me that the Pope was praying for the little girl and her courageous parents. At 2:00 am, with four grandparents and her father in attendance, on September 24th 1998 Andrea Maria Rivero-Toledo was born at Lucille Packard Hospital, Stanford University in Stanford, California. Her right leg was shorter. She had a short femur, bowed tibia, absence of the fibula and small toe. Everything else was completely normal. A long and narrow road lay ahead of Andrea, all the family and scores of wonderful people. My first phone call was to my dear friend and colleague Federico Fernandez-Palazzi a pediatric orthopedic surgeon in our native Venezuela who assured me that there was a surgical solution to her defect.  

The Fisherman

Andrea was baptized on October 7th. A card with her photo was sent to our friends and among them Fr. Dziwisz, who a couple of weeks later wrote us a letter with his congratulations, continued prayers, and to my surprise he returned the photo! I almost fainted when I realized the photo was autographed in latin “Cum Benedictione, Joannes Paulus II 19-1-99” A photo of Andrea with a blessing and signature of John Paul II. My friends have always said that no one like me to “work the phones” and this proved to be true when I found the man that would change Andrea’s life and that of the whole family. Dr. Dror Paley saw Andrea for the first time in Baltimore in September 1999 and scheduled her first surgery for March 2000. That same week of September we met in New York with Daniela Navarro Eggleston, who had been born 21 years earlier with the same problem and had undergone countless surgeries and complications. Her invaluable advice “Don’t spoil her, treat like a normal child.” That was the best advice we could ever receive. Since March 2000 Andrea has been operated on 17 times, all by Dr. Dror Paley, to whom Andrea and family are indebted for life. Today both her legs have the same length. She has been a courageous and exemplary patient loved by her doctors, nurses and rehabilitation team. She underwent what should be her last lengthening surgery last July and is doing beautifully. She practices many sports, is an honor student, has a great personality and tons of friends. Of her good looks, you be the judge.

The Shoes

A couple of years ago Andrea, then 14 years old, went with her maternal grandmother to NORDSTROM in Boca Raton, FL and while grandma shopped, a pair of shoes caught Andrea’s eyes. Grandma decided to buy them and told the sales lady that she needed two pairs because her grandchild’s left foot was larger than her right. No, replied the sales lady “It is our policy to give you the right size for each foot. We will sell one pair that will fit both feet. You don’t have to buy two pairs.” For years buying shoes was a big problem, we had been buying two pairs each time and afterwards the sole of the right foot had to be modified. It was difficult to find a shoe repair store that would do a good job. It was the first time we bought her shoes in an upscale store like NORDSTROM. Last September for her 16th birthday they returned to NORDSTROM and bought several pairs.

Andrea wind surfing after finishing all her surgeries!

Again she did not have to buy two pairs of each model. Never in our wildest dream did we ever imagine that shoes and a store, an upscale store like NORDSTROM would play such an important role in Andrea’s long road to a normal life. It has been a long road but it has built Andrea’s character. We have a very large family and all of us have been enriched by her strength and example. Andrea is starting her junior year in high school and she wants to go to college and major in biomedical engineering, a career very much related to her birth defect.

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