“When we found out about our little Iga’s condition during the birth, we felt the situation was simply very, very bad. Enormous shock and disbelief stayed with us for a long time. No one could tell us whether Iga could see or hear. An incubator helped her breathe, and our daughter was fed only through a tube,” recalls Katarzyna Czerniak of Lublin, the mother of several-month-old Iga.
The girl was born with Apert syndrome and is one of the youngest patients treated by Dr. Jeffrey Fearon at The Craniofacial Center at Medical City Children’s Hospital in Dallas. Iga recently also became a beneficiary of the Small Big Hearts Foundation. After a first stay of several weeks in the United States, the family has just returned to Poland, full of hope for the best possible development and future for their daughter.
Iga’s story is one of many told by families the Small Big Hearts Foundation has helped over the past 10 years. The organization’s founder and president is Remi Sejwa, who battled a serious illness himself in his youth. He was recently honored with the Order of the Smile 2026. And the foundation he created is now celebrating its 10th anniversary!
Ten Years of Helping
The idea for the foundation had been maturing in Sejwa for years. Many years ago, while studying in Dallas, he was diagnosed with leukemia. The treatment was long and difficult, but during that time the local Polish community (Polonia) proved to be an enormous source of support. Some helped him with housing, others lent him a car, and still others supported him financially.
“It was my dream to repay people someday for how much they helped me then,” Sejwa recalls.
The opportunity came 10 years ago, when at the Polish church in Dallas he learned about the Matuszewski family, who had come with their little daughter Laurka for treatment at Dr. Fearon’s clinic. Remi met the family and helped them organize their stay. That was when he decided the time had come to pass the kindness on and support other children coming to Dallas for treatment. That is how the Small Big Hearts Foundation was born.
From Fear to Action
For Iga’s parents, the first months after the diagnosis were extremely difficult. Over time, the questions “Why us? Why her?” began to give way to the most important one: “How can we help our little girl?”
“We knew we had to act, because we have two daughters, and we would like to give them the moon,” Czerniak says.
After Iga was discharged from the hospital, her parents learned about possible treatment options in Poland and the United States. They began looking for information, consulting doctors and talking with the families of children treated by Dr. Fearon. In the end, they also wrote to the exceptional, world-renowned specialist in Dallas themselves.
In response, they read words that stayed with them for a long time: “First of all, congratulations on the arrival of a new member of your family. The best thing you can do for her is to treat her normally, like a little girl,” Iga’s mother recalls.
The doctor also assured them that they could contact him even if they decided against treatment at his center.
“Those words meant a great deal to me personally. They showed me that behind the doctor’s knowledge and authority there is also a good person who can understand parents’ fear and support them in one of the hardest moments of their lives,” Iga’s mother says.
Dr. Jeffrey Fearon: A Specialist Trusted by Parents Around the World
Dr. Jeffrey A. Fearon is an American plastic surgeon who specializes in treating congenital skull and facial defects, including Apert syndrome and other forms of craniosynostosis, the premature fusing of the skull’s sutures. Children come to his center in Dallas from across the United States and around the world.
Treatment of Apert syndrome is complex and often requires many operations. In Iga’s case, the plan includes, among other things, procedures to separate the fused fingers and toes, as well as surgery related to the prematurely fused skull sutures. The girl has already undergone the first stage of separating her fingers. During the same anesthesia, ventilation tubes were also placed in her ears.
Her parents hope the chosen treatment method will reduce the number of necessary operations and give Iga the best possible conditions for development.
“This Normalcy Is What We’re Fighting For”
“Both of our daughters receive an enormous amount of love and warmth from us and from our whole family. We will do everything so that Iga can have the best possible treatment. We also want us, as a family, to be able to experience normalcy, without the prospect of constant operations.
Because that is exactly what we are fighting for: normalcy. We want Iga to be able to function as well as possible, to live happily with us and to spend her time at home, not in the hospital,” Czerniak says.
For Poles in Dallas, Helping Is in the Blood
Over 10 years, the Small Big Hearts Foundation has helped 28 families. Its work would not be possible without the commitment of volunteers, donors and partner organizations, including the Dar Serca Foundation of Chicago and Ronald McDonald House of Dallas.
Among those involved with the foundation from the very beginning are Dorota Piszczor, who coordinates the stays of families coming to Dallas, and Jola Ząbek, who makes sure, among other things, that family tables never lack home-cooked food and a touch of Polish warmth. There are also Andrzej, Marek, Łukasz, Iga, Julia, Ola and many other wonderful people who love to help.
Some 50 to 60 volunteers have come through the foundation. Each has a job and daily responsibilities, yet finds time to help others, simply out of a need of the heart. The Polish community in Dallas is exceptional; here, people have helping in their blood.
Volunteers pick families up from the airport, help with interpreting during doctor visits, organize transportation and group outings, cook, extend invitations and, above all, support parents during the difficult time of their children’s treatment far from home. Thanks to them, a stay in a foreign country becomes at least a little easier and less stressful.
The foundation helps not only families from Poland. Its beneficiaries have also included patients from Italy, Russia and Romania.
Help That Changes Lives
Iga’s story is one of fear, difficult decisions and a fight, at all costs, for the best possible future for a beloved child. It is also proof of how much it means to have the support of people who know how to be there when it is needed most.
The Small Big Hearts Foundation’s 10 years of work show that even a small group of dedicated people can truly change the lives of children and their families.
To mark the occasion, the foundation held a charity ball in Dallas over the weekend. It was a beautiful, moving event that drew several hundred guests from Texas and many other states.
Anyone can still do their part and help the foundation continue this remarkable mission.
More information and ways to help are available on the foundation’s website:
Baby Iga’s story can be found on the blog “Po prostu Iga” (“Simply Iga”):
https://www.facebook.com/61587409508206/posts/122134061439246983/?checkpoint_src=any
Ludmiła Mituła
Dallas, Texas
