"Sophie was born in a beautiful, mountainous region of Guizhou, China. She was born with cleft lip and palate, which means her palate and lip did not close in the womb. She was adopted in December of 2010, and brought our gorgeous girl home just before her first birthday. When my husband Ryan and I traveled to China, we were so excited to be her parents! We certainly were nervous as any new parent would be, but we had taken parenting classes, adoption classes, met with our amazing surgical team, and of course, we purchased ALL of the “cleft specific” bottles we could get our hands on. We overpacked like most first time adoptive parents do, traveled across the globe, saw some sights and finally arrived to our destination in her home province of Guizhou. Jet lagged and over-caffeinated, seated in a drafty, cold office building, we anxiously sat waiting to meet our daughter. Finally, after hearing the elevator open and footsteps shuffle towards the door, it opened, and there she was! Tears and overwhelming emotions flowed, and our prayers were answered. Although there was some fear no doubt on both sides, parent and child alike, we parents thought we were prepared. We were wrong. We were taught a lesson that day; we had no idea what we were doing, but she educated us pretty quickly. My husband Ryan lovingly had prepared one of our special "cleft specific” bottles for me to give her for her first feeding. This item was so foreign to Sophie. She didn’t like it and one of her caregivers quickly stepped in and handed me a bottle she had prepared. It was a standard-issue drug store type bottle. Sophie’s face lit up, she grabbed onto it, and chugged that thing in minutes like it was nothing. You have to understand my astonishment...she had a large cavernous hole in her mouth that led food straight into her sinus cavity. Imagine trying to drink something with no affective barrier to your nose! She showed me her strength that day. I got a tiny glimpse of what adaptability and resilience truly meant. It also saddened me still that she HAD to be strong, if she were going to survive in an orphanage environment as an infant, let alone with a special need that would make it infinitely harder to survive and thrive.
In the following weeks and months, we would learn how to feed her. We were in awe that she would giggle rather than cry when noodles or veggies would come through her nose as she ate. We would smile with her, wipe her nose and keep going. She had a bib on almost the majority of the time, because her beautiful open smile also let the drool out as well as the joy.
She had countless long doctor’s appointments, and her first palate surgery was in March of 2011, to close her soft palate. This precious girl broke my heart to pieces when they wheeled her to her room where I was waiting after surgery. I could see the bed, but they paused outside of the door. I peeked out, and saw my baby with a puffy, bruised face. She saw me and despite her drowsiness, urgently reached for me and started to get up to climb into my arms. Her first surgery on her lip was three months later, and I’ll tell you, I was almost sad to see her wide, baby toothed beautiful smile go. She healed beautifully, and although she had several surgeries to go in the years to come, she could now eat without food coming out of her nose. Because she had a closed palate now, she could start forming words properly and her speech took off. She has endured a lifetime of difficulties. For reasons that we may never know, but we suspect had to do with her birth parents’ inability to give her the medical attention she needed, she lived in a social welfare institution until we adopted her at 11 months. She has endured being taken from everything she knew, her birth parents, birth country, and has experienced the stares of strangers, several surgeries, pain and recoveries, and has done it all with unimaginable quiet strength and dignity. Also, Sophie’s Dad tragically passed away very suddenly in 2018. This was a huge loss to our family that we are still grieving of course. We didn’t have much time to grieve however, before Sophie needed her biggest surgery yet. Her palate bone graft surgery was scheduled for the late summer of 2019, where her surgeon replaced part of her missing hard palate with bone from her hip. Next up and fast forwarding to now, we start orthodontic treatment this year.
When the Magical Moments Foundation contacted us and shared that Sophie had been granted the wish of her choice, we were so shocked, humbled and excited, of course! I have to admit, I was surprised when I had to explain to her why she had been chosen. I’d like to flatter myself into thinking it has to do with my positive parenting, but no, she just sees herself as a normal kid who happens to have surgeries from time to time, and a scar that is fading as the years go by. What a wonderful opportunity for kids who may survive their facial differences, but have to endure SO MUCH adversity. Children with facial differences are often bullied and often not given the kindness and dignity they deserve. They have to adapt, be resilient, and it’s all very exhausting for them emotionally as well as physically. It’s usually a lifetime of medical appointments, surgeries, speech therapy, possible cognitive delays, hearing issues, ENT issues, learning to eat differently, plastic surgery, etc.
Magical Moments Foundation gives children with facial differences a special opportunity for hope and inspiration. This foundation is giving them an exciting chance to dream and explore opportunities that they may not have thought possible. I couldn’t love this organization more. From a grateful mom, thank you Magical Moments Foundation, for bringing some joy and inspiration to my own precious daughter."
Kassidey was born with a Bilateral Cleft Lip and Palate. Kassidey has 4 siblings, 1 sibling that was diagnosed with Spina Bifida as an infant, and another sibling that was diagnosed with cancer as an infant. In 2016, Kassidey's father passed away from cancer, and 3 short months later, her paternal grandmother also passed from cancer.
Kassidey has had a difficult journey, including several surgeries of her own, but she has always radiated joy. Kassidey is described as having "the most amazingly caring heart".
Magical Moments Foundation made all of her dreams come true! Magical Moments Foundation was able to provide Kassidey (and her younger brother, Owen) a fun-filled, inspiring weekend that they will NEVER forget.
Ava was born with a severe bilateral cleft lip and palate and a congenital limb amputation due to amniotic band syndrome. Having undergone multiple reconstructive surgical procedures, Ava is kind, resilient, and simply amazing! She dreams of someday writing and producing horror films, and her wish was to learn about how such movies are made. This Halloween, Magical Moments Foundation connected Ava with director/writer Chris and makeup artist Skeet of Universal Studios. During her private behind-the-scenes experience at Universal, Ava learned all about horror movie magic as she was inspired and encouraged to follow her biggest dreams! Nothing can hold her back!
Julien is an intelligent, loving, and resilient 4-year-old boy with a big sense of humor! Julien was born with Crouzon Syndrome. Since the age of 6 months, Julien has undergone 17 surgeries and countless hospitalizations due to his craniofacial condition. He has been a warrior since birth, having been born at 30 weeks, and has championed through each medical obstacle he has faced. His medical conditions do not stop him from being active (when medically possible); and inquisitive, as he loves to explore, sing & dance, and pretend-play. Julien is well-known and loved at his treating hospital, as most of the staff has had the privilege of seeing Julien grow up. Julien loves karate and aspires to be a ninja when he grows up! Julien also enjoys swimming and swimming helps further develop his motor skills!
Lauren was born with Nager Syndrome. From early on in the NICU, her family realized that Lauren responded with music, specifically listening to the singer, Jewel! She found solace in music. As Lauren got older, she started asking questions about the lyrics and what the words meant. This inspired Lauren. She started writing her own lyrics and dreams of becoming a singer/songwriter like Jewel. Lauren's magical moment was to meet Jewel... Her magical moment came true!
Levi is a charming 6-year-old boy born with a Cleft Lip and Palate! Levi has had 3 surgeries so far and is the most resilient little boy. He's getting ready to start Kindergarten and is eager to make new friends! For Levi's magical moment, he wanted to experience what it would be like to be a monster truck driver!
Magical Moments Foundation made that wish come true! Levi and his family spent some time at the Charolette Motor Speedway Track in NC, and while there, he met with real monster truck drivers, had a complete VIP experience (complete with a ride-a-long in a monster truck), attended the Circle K Monster Truck Bash, and was treated to weekend filled with fun surprises! Levi received special gifts along the way including dinner at the track the night prior, plenty of souvenirs, and even a day at Great Wolf Lodge!
Michaela was born on April 28, 2016, at birth we found out that she was born with a complete bilateral cleft lip and palate. Michaela was born at St. Ann’s Hospital, by the evening Nancy from Nationwide Children's Hospital came to educate us how to feed Michaela and gave us lots of helpful information about her cleft lip and palate. Michaela had several appointments her first year of life to undergo and fix her lip and palate. At 3 and 6 months her lip was repaired. At 11 months Michaela’s palate was repaired. Around 3 Michaela had her fistulas repaired. Dr. Kirschner was a huge part of Michaela’s team. They have touched our lives and became like friends. Now as the years go on we check in once a year. Michaela will have her next surgery in the next couple of years, the bone graph. Along with having the cleft lip and palate, Michaela has many more obstacles she has faced in the short 5 years of her life almost 6. Michaela had a hard time with feeding, failure to thrive, at 3.5 months old she had a feeding tube placed. Michaela started having seizures a week after her tube was placed, seizure free for over 5 years but still has abnormal EEGS. Ventriculomegaly of the brain, microcephaly. At 9 months we found out that she had CVI, Cortical Vision Impairment. Risk for aspiration, she eats honey thick consistency baby food. Quadriplegic infantile cerebral palsy, severe intellectual disability. Just had VDRO (Varus DE rotation Osteotomy), Bilateral Pelvic Osteotomy and Adductor Release to fix her hip dysplasia. Michaela is a very busy girl with seeing over 20 specialists and doing multiple therapies a week at Nationwide and at school.
Michaela's wished-for magical moment was to visit Walt Disney World to meet the princesses! Magical Moments Foundation made her wish come true!
My husband and I found out at my 20-week ultrasound that Devin was going to be born with the same birth defect I was born with, cleft lip and palate. Until that moment we didn't know it was genetic seeing as I was the first person in my family to be born with that birth defect. It wasn't until we met our little guy that we found out that he would receive another difficult diagnosis. Devin was also born with Sturge Weber Syndrome. He has a very diffuse port wine stain over his face and various areas on his body. Along with the port wine stain he has severe glaucoma and is almost at the point of needing surgery as the medication is not strong enough for how severe it is. When he was first born, he had as many as 4 doctor's appointments a week between the two diagnoses. For the Sturge Weber diagnosis, Devin has had countless procedures under sedation for laser treatments and to closely assess his eyes. In treatment for his Cleft Palate Devin has already had 3 big surgeries. He is now undergoing the orthodontic process. Devin also struggles with anxiety and ADHD. This has made his journey that much more difficult for him. Despite all of his differences Devin has remained a very joyful, loving and kind child.
Devin's wished-for magical moment was to visit Walt Disney World! Magical Moments Foundation made his wish come true!
Konnor is an amazing 12-year-old who was born with a bilateral cleft lip and palate! A few words from Konnor's mother:
"In May 2012 we met Konnor for the first time in a small room in China. He was 13 months old and instantly we knew our lives were forever changed. A month later he had his first surgery to correct his bilateral cleft lip/palate and hearing. This was the first of many surgeries for him. Palate repairs, lip repair, multiple sets of ear tubes, the tooth extractions, scans and therapies have all lead him to now. He is now doing amazing. There have been hard days, cleft can be socially isolating for many reasons, but we have an amazing team supporting us and family/friends that adore our son. Over the last 10 years I have had the honor to watch this young man thrive. The way he has faced each new hurdle head on without complaint, the way he has supported his younger cleft effected brother on his journey, the compassion he has shown to peers who have their own struggles or the way he has pushed himself out of his comfort zone so he can achieve his goals is all an inspiration to me. My Heroes call me Mom and I am beyond blessed to walk this journey with Konnor."
Konnor's wished-for magical moment was to meet Lego Masters! Well, Magical Moments Foundation made that happen!
Rachel is a delightful young woman who was born with a cleft lip and palate, a small lower jaw, and hearing loss. The combination of her small lower jaw and her cleft led to serious challenges as an infant, and she required a tracheostomy to breath comfortably and a feeding tube for nutrition. She would have more than eleven surgeries before she was two, but by then her jaw was big enough that her tracheostomy was removed and she was eating safely. Rachel has spent her life battling the dual challenges of hearing loss and speech problems. She has worked relentlessly with her speech language pathologists, her audiologists, and her surgeons to improve her hearing and her speech. To date she has had 36 surgeries, 38 hospitalizations, and hundreds of clinic appointments. Her strength of will and her resilience through have inspired all those who know her. As she enters young adulthood, Rachel is tackling high school while also preparing for her next stage of surgeries. Due for more surgery to enlarge her jaw and improve her speech, she is not letting these challenges interfere with her friendships or her plans after high school to obtain her nursing degree. Her ambition is to help other children cope with hearing loss, speech difficulties, and the challenges of surgery.
Rachel’s wished-for Magical Moment is to meet Stephen Curry, point guard for the Golden State Warriors, and to watch the Warriors play live. Her highest dream is to arrive to the game in a yellow Lamborghini!
Christian was born in 2011 with one of the rarest forms of cleft lip and palate. At the time of his birth, there were only around 60 medically documented cases of his condition ever recorded. Christian's cleft is unique in that it causes his eyes to not develop in utero and caused him to be blind. He's had around a dozen surgeries so far to repair his clefting, and thousands of doctor visits over the years, but despite the challenges he's faced, Christian is one of the bravest, funniest, and happiest people I know. He faces each day with a confidence and joy that I could only ever hope to have.
Christian is a true car guy. He loves listening to videos on Youtube of car start ups and has learned what different makes of vehicles sound like when they start. Around Christmas, a local car dealership had a cruise in where they asked car enthusiasts to bring their vehicles by to let Christian see them. He sat in somewhere around 40 cars that day, and even accidentally drove about 20 feet in one!! (Mom's still recovering from that scare!). He asks almost weekly if he can go back to a car dealership to see more cars! Christian would love to go to a car manufacturing factory to see how cars are made.
Meet Jacob!
"My son was born with a cleft lip and palate. His life was off to a rough start. He had a long stay in the NICU. Many visits to a speech therapist so I could learn to feed my baby. At 3 months old, he had his lip repaired. His head was not growing at an even rate, so he wore a corrective helmet for several months. His hearing was affected by the cleft, so he had ear tubes placed. At 12 months old, he had surgery to repair his palate. He had a difficult time eating. When he was a toddler, we had speech therapy come to our house. He wouldn’t swallow his food. He’d chew it and hold it in his cheek. After many rounds of therapy, he finally got the hang
of chewing and swallowing. When he was in 2nd grade, he had a piece of hip bone removed and placed in his mouth. He was very upset that he could not participate in gym class for several weeks while he healed. His underbite was so severe that he had a round of braces with a special appliance that he’d wear at night. He very rarely complained. Then we found out he had some granulation tissue in his right ear. He was constantly getting tubes placed. Then came another round of braces with a palate expander. His one nostril is collapsed in because of the cleft. He’s missing 2 of his front teeth. He’s very self conscious about it. He is now 14 years old and starting high school. He’s afraid kids will make fun of him. He has a 3rd round of braces on now. His gap is noticeable when he smiles, so he avoids smiling. The surgeon anticipates jaw surgery when he’s 18 and another round of braces to correct his severe underbite. He’s been a trooper through everything. Now that he’s a teenager, he’s becoming more aware of how he looks differently than his friends. As a mother, I try everything to make him feel more comfortable, but he’s still very self conscious. I’d like to do something to make him feel extra special.
His wished-for magical moment was to see the Liverpool team play! Magical Moments Foundation made that possible!
