Lorelai joined her family in June of 2020. She was called a hedgehog by her parents in the NICU because of her spiky hair and it stuck as her special animal. Lorelai spent 98 days in the NICU waiting to be stable enough to go home. She joined three older siblings who love her so much. Lorelai loves any toy with buttons and will sign, "more!" when she wants a book read to her over and over. Lorelai cannot show her emotions through facial expressions but she has found many other ways to show how she is feeling. Lorelai relies on a ventilator to breath and wears hearing aids, but that hasn't stopped her from achieving some really amazing milestones that felt insurmountable when she was born. Her family and friends love watching her grow and can't wait to see where she goes!
Reese was born June 25, 2020. She had a rough start during pregnancy losing an identical twin in utero at the 12 week mark and was diagnosed with bilateral club foot at her 20 week anatomy scan. Doctors warned that Reese was at high risk of miscarriage as well due to the passing of her twin sister. When Reese was born she had a difficult time eating and it took her hours to finish bottles. It was after her mom took her back into the hospital due to struggling to breastfeed and drink a bottle that doctors diagnosed her with Moebius Syndrome. Her body was tired and working too hard to consume enough calories to sustain her growing body so at 2 months old Reese had a gtube placed. She has been thriving ever since. She underwent 4 months of casting for club foot, has been in speech and PT since she was 5 months old and most recently passed a swallow study which determined her swallow is now safe! She has also undergone 2 corrective surgeries for strabismus (cross eyes) with the 2nd surgery being successful. We are being discharged from various specialists because of how far Reese has come. She is such a happy baby that loves her family, playing with other babies, snuggling, toys, snacks and working hard to keep up with her older siblings. Our life is complete with Reese in it and everything she does is extra special because she has to work so hard to accomplish it.
Rafael was born in September 2020 along with his twin brother. Rafael’s twin was able to come home immediately; but Rafael needed to stay in the NICU for 96 days, and then spend another two months at a transition home before he could finally come home to meet his twin brother and his older brother. Rafael really started to thrive once he got home, and he is always striving to keep up with his brothers. Rafael loves playing peekaboo, petting our dog Lily, listening to and making music, and playing soccer with his papá. He loves closely examining each toy to see how each one works. He has a tiny smile and loves to communicate using gestures and sign language to tell us his thoughts and feelings. Rafael’s greatest challenge is probably his feeding difficulties. He is fed with a gtube and has feeding therapy to help him overcome his oral aversions and learn to swallow safely. Every day Rafael amazes us with his sweet personality and his persistence at every task before him.
Rose is our little owl - she has soulful eyes, very  content personality and is persistent and determined to achieve her goals - whether they be taking down a safety gate or putting together a puzzle. Rose loves to read, draw, play with other children and is a complete cuddle bug. She has a big sweet tooth and has too much screen time.

Rose was born on July 24th, 2020. When she was born she couldn't eat and ended up needing an NG tube for the first 5 months. A 3T MRI at Boston Children showed us why - she was missing both of her 6th and one of her 7th cranial nerves with the other being shorter than typical. The first six months home was a whirlwind of specialist evaluations: neuro ophthalmologist, genetics, pulmonary, neurology, dental, orthopedics, feeding specialists and ongoing physical therapy, occupational therapy, vision & speech therapy each week. ​We are so privileged to live in the best place in the world for medical care and live with purpose, optimism and joy!
Kane was born on January 29th, 2020 in Edmonton, Alberta, Canada. At Kanes 12 week anatomy scan they found that Kane was missing his left hand. We as parents grieved this process and were ready to welcome Kane into the world. Kane was born via emergency c-section and arrived earth side ready to fight. He spent 2 months in the NICU undergoing tests and seeing countless specialists. At 5 months old Kane was diagnosed with Moebius Syndrome and Poland Syndrome. At home Kane plays with his big brother Kai, whether it be dancing, playing cars, or getting outside. Kane is determined to meet his milestones and shows us his zest for life everyday. Kane communicates with others by using sign language and sees his Speech Pathologist to help him progress in this area. He is attending physiotherapy and occupational therapy to help him with things like crawling, walking, and building overall strength. Kane loves to eat absolutely everything and is still learning to take in larger volumes by mouth, however the majority of Kanes Nutrition is provided through his G-Tube (feeding tube). Kanes biggest challenges include eating, secretion management, and respiratory illnesses. If you ever get the chance to meet Kane, he will be sure to charm you with his humorous personality, smirk, and belly laughter. He is resilient, persistent, and the absolute definition of a true warrior.
Easton was born on a cold snowy day, January 23rd, 2020. Easton was a very long awaited and celebrated pregnancy that had some hiccups along the way. There were many times where we were very scared for him before his arrival. Easton joined us earlier then expected… and only hours before January 24th, which we know now as Moebius Awareness Day, a very important day for us now. In the hospital Easton had no mouth movement, no suck, and a very weak swallow. The hospital where he was born had no paediatrician on site to help in figuring out what was going on. We were discharged a few days after he was born with a request for follow up, when we likely shouldn’t have been. Easton was fed with a dropper for the first few weeks of his life. He struggled to gain weight, and was not thriving initially. But with time and commitment, his swallow and suck got stronger. At almost 2 months old, Easton was able to successfully drink from a bottle, even though it would take a very long time, he was no longer aspiration . It wasn’t until over 3 months old that we met our wonderful paediatrician, who was able to steer us in the right direction, Moebius Syndrome. After that point, a whole team of specialists and therapists wanted weekly updates and appointments with little Easton to help make sure he would only thrive here on out. Later on Easton would be diagnosed with global development delay, a visual impairment and in the future a potential ASD diagnosis. Easton is a quirky boy with a vibrant sense of humour. He is constantly trying to make his mom and dad laugh, or is making himself laugh. He loves snuggles from his family, and snuggles with his furry friends at home. He loves his toy cars, painting, and babbling. Easton puts a smile on the faces of everyone who meets him.
Ally was born in Australia during the month of June 2020. Affectionately nicknamed "Ally-Cat" since pregnancy, that name turned out to be a great fit - as we soon realized she had nine lives. Ally was born with a series of congenital birth defects that made her first 12 months earthside extremely challenging. She spent the first three months of her life, fighting to breathe on CPAP before a life-saving surgery allowed us to finally come home. By the age of 12 months, Ally had overcome three major surgeries, more than 15 hospital stays and more ambulance trips than one ever should. Ally has continued to amaze everyone around her with her determination, sass and resilience. ​
Russell joined his family a week before Christmas in Mobile, Alabama. Not much was known about what Russell's needs would be after he was born, but it was a scary few months of waiting for test after test and for one of the multitude of seizure medications he tried to start working so he could go home to Virginia. Russell was diagnosed officially with Pontocerabellarhypoplasia type three (PCH3) when he was 18 months old. For him that looks like hypotonia, epilepsy, and intellectual disability. He also has Congenital Primary Aphakia, an eye condition that includes smaller eyeballs, no lens and corneal clouding. Though he cannot see the world around him, besides some lights, he has the biggest and brightest smile and most adorable laugh and lights up at the sound of his name. He brings love and light to everyone who meets him.
This is Romy Quinn. Romy was born on the 13th of January 2021. Romy, being born with Moebius syndrome was very unexpected and she seemed like a healthy baby. On the first day of her life, I started to pick up on her “being lazy". She wouldn’t breastfeed. She wouldn’t take a bottle and she had to be syringe fed. The doctors and midwives just kept telling me that “it’s completely normal. She’s just very tired from the c section”. On the second day we really had to try and get her to eat and the exact same thing was happening. I figured out that if I squeezed her cheeks together that she would take a bottle. I knew this wasn’t normal, but it was all that worked at the time. Romy lost more then 10% of her birth weight. I wasn’t happy and instinctively knew that was something wrong. I pushed more and more breast into her mouth just so that she got the suction, which eventually worked and we were able to have a lovely breastfeeding journey. I count my lucky stars for this. We spent a few weeks at home squeezing her cheeks together in the hopes that things would get better. It never did. I started googling frantically. I was 4 weeks postpartum and full of emotions, so as you can imagine, I was beside myself and thinking the worst. My research led me to Moebius syndrome and everything lined up. Everything that it was telling me was exactly what Romy was going through! I booked a doctors appointment with my GP and demanded to be seen by specialists. I was not taking "no" for an answer. Off we went, 8 hours away and we had our diagnosis 2 days later. It definitely gave me piece of mind and it helped knowing before hand what it may have been. We were ready for this diagnosis, we just needed it to be official. Romy is 1yo now. She's starting intensive therapy & speech therapy and she is behind in most milestones, as she has hypotonia. Romy is an amazing little girl who is one of the biggest blessing of our lives. We couldn’t imagine our life without her and we are blessed to be in such an amazing community, who can help us through this.
William Avramenko was born on January 31, 2020. Although his parents knew of the club foot diagnosis after the 20 anatomy week ultrasound, his limb difference in his hand and Moebius diagnosis were a surprise. Will has seen many knowledgeable specialists at the UW children’s hospital and although he can’t smile, he sure knows how to charm everyone there with being what he calls himself “a hug machine.” Will is our squirrel because he is such an avid climber. He represents the hearing issues some of our Moebius children face. He has been through countless hearing tests at different stages of life and will be receiving tubes in his ears as his hearing remains a mystery. At this point cochlear implants are not a good solution to his hearing loss because he has no nerves to amplify the incoming sound. Like everything in his life, Will has found a way to adapt to his differences. Along with many words that he can say, he uses sign language regularly to communicate with all those around him. We know that Will will be like his squirrel character and climb high in his life!
Dakotah was born October 15, 2008, in Ohio. Such a beautiful baby girl that looked like a china doll with dark hair and bright blue eyes. She stayed in the NICU for several weeks until she was finally able to go home and join her family. Like many babies with Moebius Syndrome, Dakotah struggled with eating and was sent home with a NG-tube. She later transitioned to the G-Tube until she taught herself how to use a bottle. Like many of the children born into the Moebius community, Dakotah had Hypotonia (low muscle tone) and Strabismus (crossing of the eyes). She had surgery to correct the Strabismus at a very young age. Due to the Hypotonia, Dakotah used a tiny walker to build muscle strength, as well as walking in the wading pool to learn balance. She no longer needs the walker and now swims like a fish, one of her favorite summer fun times. Dakotah also has an incredible memory for names. Once she meets a person only in passing, she will permanently remember their name and bring them up years later. She loves to sing, swim, play with her dolls, write on her IPad, listen to music, enjoys family time and doing all things teenagers enjoy. When Dakotah was nine years old she had bilateral smile surgery (each side done 6 months apart). She now has her own uniquely beautiful smile. Dakotah is medically fragile and susceptible to respiratory infections and pneumonia. Twice she almost lost her life to pneumonia, but has a warrior’s heart and returned to her family. Upon regaining consciousness, Dakotah spoke of the angels that visited her, which were later depicted in a painting that hangs on the wall in the Neuroscience Unit at Cincinnati’s Children’s Hospital. A raccoon was chosen to represent Dakotah because she is also Autistic. Approximately 25% (possibly more) in the Moebius community have Autism. When you see Autistic children moving their hands, it is called stimming. Stimming helps the child process their surroundings and to cope. Since raccoons have hands and are nocturnal, a raccoon was a good fit to represent Dakotah. As a baby, Dakotah slept very little, which is also very common in the community, and is drawn to lights due to the Autism. Every day Dakotah is faced with challenges that would break the spirit of most, and every day she amazes us with her strength and determination to overcome the obstacles and challenges life throws at her. She is our hero and our Blessing.
Everly was born in 2016 and spent the first 2 months of her life in the NICU. Shortly after her birth, and many tests and specialist consults she was diagnosed with Moebius Syndrome.

Like many others with Moebius, Everly was born with club feet. Her feet were corrected with casting during her first year of life. She now wears AFOs (foot & leg braces) to help keep her feet corrected. Since age 3 1/2 she has walked independently with no longer needing a walker.  Everly has had G tube since 1 month of age for feedings and has experienced severe reflux for many years.  At age 5 she was able to have a surgery to her esophagus & stomach that corrected things. It is hoped that some day she will no longer need the G tube. 

​Everly loves books, iPad, dolls, music and Daniel Tiger. She enjoys riding on the school bus and attending school.
Harrison was born in the spring of 2020 in the height of pandemic lockdown. He arrived to everyone's surprise two months early. He spent six weeks in the NICU, pulled out his feeding tube and told everyone he was ready to go home. At discharge, the nurses noted facial palsy. Harrison's parents received multiple diagnoses until he was ultimately diagnosed with Moebius Syndrome. Harrison has a slight smile but is unable to make most facial expressions. He developed strabismus at 6 months of age and it was corrected successfully at Boston Children's Hospital. Harrison loves to eat and has round little cheeks like a chipmunk. His favorite hobby is reading.
In August of 2007 a healthy baby girl named Ryan was born. As much as each baby is unique, Ryan entered the world with an unexpected hand difference. The growth of her right hand had been stunted, her palm small and no fingers except a tiny thumb. 
Her parents received little information from health care professionals were left to search for answers on our own. Since then they now know that Ryan’s hand difference is known medically as Symbrachydactyly. Symbrachydactyly (sim-brak″e-dak´tĭ-le) occurs during normal embryonic development. When a baby’s hands begin to form in utero, they are shaped like mittens or paddles. Then the fingers divide. In babies with symbrachydactyly, the fingers (and sometimes the hand and arm) don’t fully form during this time.

This may happen because the area doesn’t get enough blood flow or because of some other problem with the tissue. It’s not caused by anything the mother did or did not do while she was pregnant. While Ryan's hand is different it has never stopped her from making many friends, advocating for causes she is passionate about. She is a born leader and excels in sports like soccer, volleyball, and track. Just like a coyote, Ryan is very smart, caring, playful, and loyal.

Ryan was the catalyst to the Lucky Fin Project, a non-profit organization founded in 2010, that has become a beacon of support for families across the globe looking for resources and assurance when raising children with limb differences. 
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www.luckyfinproject.org
[email protected]​
​Griffin “Finn” was born on May 27, 2021.  We discovered his many unique features through ultrasound in utero and got a diagnosis of Heterotaxy at 32 weeks.  Heterotaxy typically means that the abdominal organs are in different places than expected.  Every Heterotaxy child is unique, but for Finn his stomach and liver are placed on the opposite than expected side of his body, he has two right sided lungs, no spleen and most concerning a series of highly complex heart defects.  Griffin was also born with some of his intestines/liver outside of his body (an Omphalocele) and needed surgery as a newborn. He has a doctor-created belly button!  

By 7 months old Griffin had undergone 3 major surgeries, including heart surgery and spent almost 2 months in the hospital.  His first few months were rough and involved slow weight gain, a stint with an NG tube, heart failure, and lots of worry, but he is now a thriving little boy who lights up our whole world.

Griffin is represented by a frog because his heart has just one ventricle (a typical heart has two!), and frogs naturally have single ventricle hearts!
Reed and Jasper are so thrilled to play and learn more about Moebius Syndrome. Unlike a lot of the other children featured in the book, Reed and Jasper did not have Moebius Syndrome, but many of their complex health considerations were very similar. 

​Reed experienced hypoxic-ischemic encephalopathy (HIE) or oxygen deprivation and low blood flow to the brain at or near birth. Like some children with Moebius Syndrome, he has muscular hypotonia or decreased muscle tone. He had a lot of spiky dark hair, just like a cute little fox.

Jasper had a rare gene mutation that impacted his heart and lungs in particular, and he also had cerebellar hypoplasia which can manifest in speech delays or issues with articulation and word formation, similar to many children with Moebius syndrome. Jasper was short and chubby and had the cutest little nose.

Reed and Jasper passed away soon after they were born, but their short lives have already have a big impact in supporting infant loss awareness and awareness of supports for medically fragile children. Their moms are honored for the boys to be included in this book, and to be able to support and bring awareness to the considerations of other medically complex and fragile children. 
Daisy entered our world in 2012 in a whirlwind! She was 2 months early and little did we know how traumatic, amazing and short her little life would be! Daisy’s strength shone from the moment she was born. She fought against all the odds to spend as much time with us here on earth. She was stunningly beautiful, very clever and devious in a lovely way (like a naughty puppy) she had such a strong will and knew her own mind and how to let us know it!! She may not have been able to smile, but, as the Duchess of Cambridge said to her when she met her, she smiled with her eyes! She communicated everything with her eyes and body language, you had to be sure to duck for cover when she was cross!! Daisy left our world in 2019. We are absolutely heartbroken and I feel as though a huge part of me went with her. However, we are eternally grateful that such a beautiful soul was sent to spend her time on earth with us. Daisy is now sleeping with the angels
Bexley's beautiful life began with a rough start in pregnancy. At her 20 week ultrasound, Bexley became a high-risk pregnancy, and that is when our long journey of travelling to Edmonton, AB, Canada began. There Bexley was diagnosed with bilateral clubfoot and was at risk of preterm delivery. Her concerned pregnant mother spent a couple of weeks at the Royal Alexander Hospital until it was safe to return home. She born in November 2020 at 36 weeks. Bexley was welcomed into the world fighting, struggling to manage oxygen levels, and that is when the doctor confirmed Bexley's soft palate was affected. Later that night, she was airlifted to the Stollery Children's UofA Hospital NICU, where her family resided for a total of 4 months. During that time, Bexley underwent genetic testing and treatment for her clubfeet. She had Magnetic resonance imaging (MRI) and Electroencephalogram (EEG) done. At two months old, she was clinically diagnosed with Moebius Syndrome. Bexley was sent home with oxygen, NG feed tube and suction to manage secretions. Now Bexley gets all of her nutrition thought a G tube rather a NG. After the palete repair Bexley has learned to manage secretions, she is starting to wean off oxygen and the surgery has even changed pitch. The turtle symbolizes longevity, knowledge and endurance; Bexley continues to educate others by showing her strength and resilience. Bexley has endured and overcome more than the average adult. Bexley is strong like a turtle's hard shell, but she is also sweet, gentle and loving like the soft insides of a turtle. With every setback, she's learned to climb mountains and will continue to! She's one of the sweetest, loving and happiest babies you'll meet. Bexley likes to sing, snuggle and tap her boots.
Sloan was born in the summer of 2021. At our 20 week scan, her doctor noticed her bilateral club feed, limb differences on her feet, toes, hands, and fingers, and her small jaw. Once she was born, we spent 71 days in the NICU prior to bringing Sloan home. Initially we were there for respiratory issues. Quickly we learned that Sloan had eating challenges. Later, we learned she has Moebius Syndrome.
In addition to what we learned at her 20 week scan, like many of her other Moebius friends, she is not able to blink, she can only look up-and-down, she has facial paralysis, she has a small tongue and high palate, and weak upper tone. Although she loves to eat, her muscles just aren't strong enough to safely drink enough from a bottle so she gets the majority of her nutrition through a g tube.
Also, like our other Moebius friends, Sloan has weekly PT, OT, and feeding therapy sessions. We have multiple doctors appointments weekly, too.
Sloan loves to laugh, read, and explore new toys!
Ashwin was born early in 2020, and was diagnosed with Poland-Moebius syndrome 6 months later. We found out at our 12 week scan that Ashwin would be born with a limb difference, and just when we had digested this, we were told in his 16 week scan that he likely had club foot too. Needless to say, we were pretty worried during the rest of the pregnancy as to whether anything else would be found!

​When Ashwin was born, we found out he had some other physical differences on his left side, and we were referred straight to genetics. Ashwin was really sleepy and we had to wake him up to feed, which he had issues doing. At the time, we were told to be persistent, and with a lot of struggle and pain we managed to start our breastfeeding journey, which we are very lucky to have had. The midwives and doctors noted that Ashwin managed to cry without moving his face, but due to the rarity of both Poland and Moebius, we had no diagnosis when we left the hospital. We had about 2 months prior to lockdown starting so our journey to diagnosis was limited to video calls; however, Ashwin is so determined and happy, he has quelled all our initial fears for him.
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He needs orthopaedic boots, is under review for hand surgery, and has frequent ophthalmology appointments as he has two types of strabismus, which is unusual even in the moebius community.

Ashwin loves to be the centre of attention and playing pranks, and he is working hard on pronunciation as well as signing so that he can get into more trouble!
Ozzy was born in September of 2020 and spent 18 days in the NICU in PA. Moebius was suspected and was later diagnosed by a specialist at Cincinnati Childrens' Hospital near where we live in Ohio. 

Ozzy had alot of struggles eating and gaining weight. He is primarily affected on the left side of his face with no hearing in his left ear, strabismus in the left eye, left sided facial paralysis, missing teeth and smaller facial structure on the left as well. Ozzy also has Pierre Robin Sequence. Ozzy is followed by neurology, ENT, ophlamology, allergy, plastics, and genetic specialists.

Ozzy loves to be outside and enjoys spending time with his brothers. His favorite food is watermelon, and he will talk your ear off babbling! Ozzy is super curious about the world around him and prefers to run rather than walk. 
Emma was born August 11, 2018.  The day after she was born we started to see her struggles of strabismus, facial paralysis on the left side, difficulty eating and silently aspirating. She was transferred to Boston Children’s Hospital where she spent many weeks and was finally diagnosed with Moebius Syndrome by way of an MRI. She was sent home with an NG tube, but she kept pulling it out, therefore a G tube was surgically installed. After a year and a half, she was able to have the G tube removed because she was doing well with solid foods.
Emma has had two strabismus surgeries. Her first surgery corrected the positioning of both her eyes. Unfortunately, her second surgery, done in February 2022, was unsuccessful. At her 3 month post op visit her doctor did not see much improvement. He is hopeful however that over the next few months we will see her eyes start to pull more towards the center.
As of right now Emma is a friendly and happy 4 year old who loves to be with family and friends. She just welcomed a new sister, Adalynn to the family and Emma is always concerned that her sister is safe and taken care of. She loves to play outside, play dress-up, and loves anything Disney. Her new favorite thing is school and she loves anything about it and cannot wait to get there every day. Emma is a very smart, brave, and strong little girl, who never gives up and brings so much joy to our lives.
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