During Liane Rensing’s 20-week ultrasound, it was discovered that her baby, Mila, had a cleft lip. This diagnosis expanded when Mila was born with a right-sided incomplete unilateral cleft lip and a complete cleft palate.

The first year of her life brought challenges to the Rensing family as they learned to navigate caring for Mila. “We learned how to feed and take care of her with feeding devices like special nipples and bottles,” explains Liane. “We had to figure out how to tape specifically designed appliances to Mila’s nose and forehead to prepare her for her cleft surgeries. Miami felt like our second home since we traveled there for Mila’s numerous surgeries and appointments.”

“Take one thing at a time… there is a light at the end of the tunnel. Do your research for your child on the best physicians and care for them like we did when we found Nemours. You are the only advocate your child has, so you fight for her/him for the best care your child could ever need or receive.”

— Liane Rensing

In their pursuit of finding the best care for Mila as she grew older, the Rensing family discovered Nemours Children’s Health. Their first experience with Nemours Children’s was with an audiology test and sleep consultations with Dr. Kanamori at Nemours Children’s Hospital, Florida. As the Rensings’ health insurance changed, the family needed a cleft team for Mila as well, and they hoped to find one closer to home. “After doing some researching online,” says Liane, “I learned that Nemours Children’s Health had a newly established cleft team and was on our health insurance plan. I was so excited to get Mila in there and it was closer to home! We immediately made an appointment to see Dr. Kellogg and his amazing Cleft and Craniofacial Team.”

“Dr. Kellogg has amazing bedside manners and I felt like he truly listened to our concerns and questions. I could tell right away that he is very compassionate and understanding. He was very thorough and informative and got us on the right track of what is next for Mila in her Cleft journey. All the other physicians, clinicians, nurses, speech pathologists, etc. were very supportive and guided us in the right directions as well.”

Mila underwent alveolar bone graft surgery at Nemours in March of 2023. During this procedure, Dr. Leto Barone borrowed bone marrow from Mila’s right hip, which Dr. Kellogg used to repair the cleft in the gumline and to support eruption of her adult teeth. Post-surgery, Mila healed exceptionally well, and a 6-month follow-up revealed promising news—bone growth from the graft! The Rensing family is overjoyed, and Mila is on the path to recovery.

Mila’s strength goes beyond her medical journey. She has a passion for ghost hunting, YouTube videos, and a love for nature. Now nine years old, Mila’s plans for the future are as spirited as her personality. She aims to continue advocating and raising awareness for those affected by cleft lip and palate or craniofacial differences. Her dedication extends to fundraising for Nemours Children’s Hospital, Florida Center for Cleft and Craniofacial Differences. Additionally, the family hosts an annual “Rensing Holiday House Light Display ” that not only dazzles the community but also raises funds for Nemours and Operation Smile, continuing a long family tradition of giving back.

Liane shares this advice for families on a similar journey: “Take one thing at a time… there is a light at the end of the tunnel. Do your research for your child on the best physicians and care for them like we did when we found Nemours. You are the only advocate your child has, so you fight for her/him for the best care your child could ever need or receive.”

This November, in recognition of 22q Awareness Month, the FCPA focuses our patient spotlight on 9-year-old Jason Singh, who was born with DiGeorge Syndrome, also known as 22q11.2 deletion syndrome. This genetic condition, caused by a missing part of chromosome 22, can affect many parts of a person’s body, causing heart abnormalities, an impaired immune system, and other developmental delays. Features vary widely from person to person, and although there is no cure, treatment and early intervention can improve symptoms.

Jason’s mom offers important advice to new parents of a child with 22q11.2 deletion syndrome: “Stay positive!”

Jason’s mother, Salicia Singh, said that he does not have the typical 22q11.2 deletion syndrome facial appearance and has not encountered problems that other children often struggle to overcome. Jason’s complex medical history is significant for 22q11.2 deletion syndrome and velopharyngeal dysfunction, and his primary challenges have centered around speech and language skills. According to Salicia, the multidisciplinary team at Nemours has been especially helpful in providing support and necessary resources, and he has made steady improvement. She feels proud of Jason when he interacts with others and moves through his daily activities with self-confidence. She offers important advice to new parents of a child with 22q11.2 deletion syndrome: “Stay positive!”

Jason, currently in the 2nd grade, enjoys playing Roblox and spending time with his siblings and cousins. He would like to become a teacher after graduating from college.

Growing up with a facial difference has been interesting. Of course, there have been many surgeries, but despite that, I have accomplished quite a lot. For example, I have been an ice skater since I was four and have competed at many levels—even a national competition. I have also earned straight A’s in school because, when I grow up, I want to be a pediatric craniofacial surgeon so that I can help kids like me. Some of my other hobbies include playing the ukulele and singing, baking/cooking, and art.

“I have also earned straight A’s in school because, when I grow up, I want to be a pediatric craniofacial surgeon so that I can help kids like me.”

—Dara Beliveau

The main challenge I have experienced because of my facial difference has been getting used to everything after surgeries and procedures. However, I have learned through all of this to stay positive because that helps so much, and it would be my advice for younger children. Just try to maintain a positive outlook and see the glass as half full. The only other small challenge has been knowing what to answer when people ask me what I was born with. Now that I know how to answer, it doesn’t bother me as much, and everything is fine.

Silvana’s Story (Dara’s Mother)

Dara’s journey has taught us so much about limits that can be pushed, resilience, patience, strength, and family.

The Diagnosis

Dara’s journey has taught us so much about limits that can be pushed, resilience, patience, strength, and family.

I first learned by week 16 into my pregnancy that Dara would have a bilateral cleft lip and palate, and I will always remember that day. Although I was also born with a cleft palate, I never considered that my child would inherit it. Time stopped the moment the doctor told us because I did not know what to believe or what that even meant. My husband responded to the news by saying it was not a big deal, we would fix it. His strength and positivity meant so much to me because, even today, I blame myself for her diagnosis.

That day an angel was put into our path: Dr. Michael Gallant of All Children’s Hospital in St. Petersburg, Florida. We met with Dr. Gallant prior to Dara’s birth, and I am so grateful that we did. Over the years, he has meant so much to our family and has been with us from the moment we received her diagnosis. He and his team showed us examples of children with similar diagnoses and explained her likely timeline and the procedures she might need. And although it might seem overwhelming and terrifying, it helped me understand that Dara’s condition really wasn’t such a big deal and actually could be fixed, exactly like my positive husband said.

Birth and First Surgery

After she was born, Dr. Gallant and his team provided constant support, advising us on how to feed her, what to expect, and how to build patience on the long road ahead. They also recommended that we try to enjoy every minute of it. After her first surgery, when she was 10 weeks old, I realized that I no longer wanted time to fly by quickly, and just like the team had told me, I found that I wanted to enjoy my baby at every moment of her journey.

“I would advise you to trust your baby because he or she will be strong, much stronger than you. And remember my husband’s words: it is not a big deal; it will be fixed.”

—Silvana Beliveau

The most difficult surgery for me was her first. She looked so small when I put her in Dr. Gallant’s arms to carry off to surgery. Afterward, and before we could see her, Dr. Gallant spoke with us privately and showed us her “before” and “after” photos. My hand instinctively touched the “before” photo because that was the baby I knew and loved. He took my hand and placed it gently over the “after” picture, saying, “It is the same baby, mommy. I just made her better.”

Development

Her diagnosis had no impact on her development. At two, she took a few months of speech therapy, and we worked with a nutritionist for her feeding. However, for each of those steps, the Cleft team was there to help and coach us through. In all honesty, the whole team has been angels sent to help us.

Lessons Learned

As terrifying as this experience seemed in the beginning, on Dara’s journey I also learned how strong my child was and how resilient. Following every surgery, I would feel scared and stare at her for hours as she tried to smile through the pain and discomfort. She is my hero, the strongest and most positive person I know, and she is my inspiration. She has always been the one to grab my hand and tell me it was going to be okay. And she will be the one smiling even when life is hard and painful.

Family Support

Although we received incredible support from the cleft-palate team at All Children’s Hospital, the pillar of strength for us has been our small family of four. We stay united to weather any storm coming our way. Her little brother is the sweetest, most caring, and most selfless little man you will meet. His support to her and me has been incredible. Her dad is the positive pillar, the core of our support system.

My advice to parents who have children with facial differences is to ask questions, allow your cleft palate team to help you, take their advice, and consider them part of your family. They certainly view you that way. I would advise you to trust your baby because he or she will be strong, much stronger than you. And remember my husband’s words: it is not a big deal; it will be fixed.

My name is Randy Urbay, and I honestly do not feel like anything is wrong with me. Besides surgeries, therapies and hospital stays, I have had a normal childhood. I enjoy playing video games with my friends and going off-roading, boating, fishing, and traveling, especially long road trips in the winter.

My biggest challenge has been missing out on some events, holidays, and activities because I was either in the hospital or recovering from a surgery. My pets helped me so much, especially my dog Wallie, a special-needs rescue, who was missing one eye but was just like any other dog.

“I would tell younger kids that it is okay to be different. We are all unique and special. And being different isn’t that bad!”

—Randy Urbay

My hobbies include working out and fishing. My passions are definitely animals, especially the stray and homeless ones. I plan to go to a technical school and learn how to fix mobile devices and tablets.

My greatest strengths are perseverance. My mom never let me use adaptive devices such as adapted scissors because she wanted me to at least try and not just assume I can’t do something.

I am unique because when people look at me they assume I am different and can’t do certain things. I enjoy watching their expressions when I prove them wrong. One time we were at an arcade and I was going to play the car racing game that you can play with multiple players, well the kids were all older than me and looked at me and laughed, I laughed much louder when I beat them in all three games!!

I would tell younger kids that it is okay to be different. We are all unique and special. And being different isn’t that bad!

A Mother’s Perspective

Elsie Garcia, Craniofacial Family Advocate
Joe DiMaggio Children’s Hospital Craniofacial Program

Randy was diagnosed with Apert Syndrome at birth. It was quite shocking, as I had a wonderful and uneventful pregnancy. I had never heard of a Craniofacial Syndrome, much less Apert Syndrome. Randy started therapy at a very young age. Due to Randy’s syndrome he had airway difficulties and his oral/facial structure affected his speech and eating. He did not eat solid foods until three years of age and did not speak in full sentences until eight. Thankfully, he now has normal eating habits, and his speech has improved so significantly that he regularly gets in trouble at school for talking too much in class.

“It really does take a village. . . .  My best advice to new parents is to take it one day at a time. Do not compare your child to others with or without a condition. We are all unique and different, and that is okay.”

Elsie Garcia

The early years were very difficult because I had no idea what to expect. However, I connected with other parents through Apert International and befriended many parents experiencing similar struggles. In fact, through that organization, we became great friends with another local family whose son was two years older than Randy, and 17 years later we remain friends and even travel together. Our families have enjoyed watching the boys grow up together.

Some challenges we faced included other children making fun of him and calling him names. Communication and openness have been the key to overcoming the stares and hurtful comments. His school has been amazing with inclusion and diversity, and thanks to their efforts, Randy has no self-esteem issues at all. It really does take a village.

A very proud moment for me was learning how well Randy had advocated for himself when he cut his finger badly at school one day. Though I was not there to witness what happened, his finger had been cleaned and bandaged when I arrived at school. We then went straight to Urgent Care, where his finger was assessed, cleaned, and x-rayed. Randy explained to the doctor that the webbed fingers he was born with made them difficult to x-ray. As his parent, I understand that I cannot always be there to advocate for Randy and explain his syndrome to others, but this experience showed me that he is self-sufficient and confident enough to speak for himself. I was very proud of him, and it brought me great comfort to learn that he was able to explain his condition and communicate so well with his healthcare providers.

My best advice to new parents is to take it one day at a time. Do not compare your child to others with or without a condition. We are all unique and different, and that is okay. Never limit your child. Randy was born with webbed hands and feet and after syndactyl release and a lot of therapy, I am proud to say that he is able to do almost anything others can do. It may be a little bit more difficult for him, but he is one the most tenacious boys I know, and he always finds a way to get things done.

My name is Griffin Olson, and I was born with a cleft lip and palate. In 2016, the year I graduated from high school, I received the FCPA High School Scholarship and went on to attend Florida Atlantic University in Boca Raton, Florida. In December 2020, I graduated with a Bachelor of Science Degree in Mechanical Engineering. In May 2021, I was hired as a Mechanical Engineer for E-One, designing and manufacturing fire trucks that are delivered and used around the world.

He is an amazing young man . . . [who has] successfully handled each and every challenge, coping successfully, and has persevered. Griffin has grown into a very kind, bright, honest, and successful man who is now a mechanical engineer.
— Bonnie Olson (Griffin’s Mother)

Early Challenges

I would not be where I am today without the help of my doctors and family. Growing up with cleft lip and palate certainly was a challenge. Looking different from others is something that young children can’t comprehend themselves, so having people stare or tease is something that, unfortunately, usually happens.

As I grew older, people became more curious about why I looked different instead of making comments out of ignorance. This was a welcome change, and as a result I was able to teach many people about my condition.

Missing school because of medical appointments and surgeries presented a significant challenge. However, my teachers were all very understanding, and they made certain that I would not be at a disadvantage because of what I was going through.

I think the most important thing I have learned is that people who truly want to be your friend won’t care if you look a little different, and the people who do care are not the people you want as friends anyway.

Some surgeries were worse than others, and though none were fun, I do not regret any of them. It also helps that I remember only the surgeries from fifth grade on. Two bone grafts unfortunately did not take, so I will eventually receive a bridge to fill the gap in my teeth. In spite of it all, looking in the mirror every morning before work is a gentle reminder of everything that I have experienced and achieved despite feeling out of place as a child.

Golf & Friendships

Joining a club or extracurricular activity in high school and college was probably the most important decision I made in life because doing so gave me places where I felt like I fit in, where no one looked at me any differently because of my cleft lip. Though as a child I played baseball—from tee-ball through little league—at fourteen I transitioned to golf and was able to play on the high-school team. Through golf I made friends that I still play with to this day, and I plan to continue doing so for as long as I can.

During my first year of college, I didn’t play much, and when I started playing again in my second year, I soon realized how challenging it would be to balance my time with an engineering course load, which is why I chose not to play collegiate golf. However, I joined the Formula SAE (Society of Automotive Engineers) team at Florida Atlantic University and made new friends that were also engineering majors. One of them used to play on the PGA Tour in South America, and we are still playing golf together today. For me, the golf course has turned out to be a great place to meet new people and make lasting friends.

Five Years Later: Self-Reflection

Five years after having received the FCPA High School Scholarship, I now work as a Mechanical Engineer for E-One, designing and manufacturing fire trucks that are sent to cities all over the world. I feel proud of what I do because, in a way, I am helping to save people’s lives, just as doctors do for us.

It’s hard for me to believe that time has passed so quickly. If I were asked to give advice to a child with a cleft lip or palate, the most important thing I would say is that, as hard as life may seem at times, many people are going to try to help you through this hardship. It doesn’t do you any good to ask yourself, “Why me? Why am I different?” In the end, it will all be worth it, and you will be stronger for it.

The Florida Cleft Palate – Craniofacial Association is excited to announce that the winner of the 2021 FCPA Scholarship is Joshua D. Jacobs, a graduate of Saint Cloud High School in St. Cloud, Florida.

This fall, Joshua will attend Warner University, where he will play on the baseball team and study for a career in sports management.

While in high school, he maintained a 4.19 weighted GPA, received an Academic Letter and Academic Chevron, and was recognized as Student of the Month three times.

Joshua was born with a cleft palate and had his first surgery when he was six months old. As a child, he had two tympanoplasty surgeries and underwent six years of speech therapy. He received all medical care from Florida healthcare providers.

“Joshua is the embodiment of athleticism and leadership. . . . If I had to describe Joshua with one word it would be ‘exemplary.'”

– Kristi Parks, Saint Cloud High School Guidance Counselor

Future Plans

Joshua’s passion is baseball, which he began playing at the age of three. As a child, he played for Kissimmee Little League and Bear Creek in South Orlando. He played at Gateway High School for two years before transferring to St. Cloud High School. Since that time, he has played baseball for the St. Cloud High Bulldogs as well as the Lakeland Legends travel team.

Joshua’s dream is to become a professional athlete. While working toward that goal at Warner University, he will major in Sports Management, minor in Exercise Science, and obtain a Certificate in Dietetics. He would eventually like to use his knowledge and degree to obtain a position as a strength and conditioning coach in a major-league ball club.

Giving Back

Joshua enjoys giving back to the community by volunteering at the St. Cloud Little League, where he is able to help shape the skills and minds of the next generation of players.

Faith, a very important part of Joshua’s life, was a deciding factor in his choice to attend Warner University. His favorite bible verse, which he writes on his shoes, bats, and has inscribed on his gloves, is Joshua 1:9, which states, “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”