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!
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!
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!