Meet Mayah

Angie and Ryan had two sons and two daughters and were expecting their fifth child in September of 2015. During the 16-week ultrasound, the couple was devastated to learn that their baby had a rare and fatal form of Skeletal Dysplasia. “It was definitely the lowest, darkest place that I’ve personally ever been,” Angie remembers. Mayah, whose name means “close to God”, was born at 35 weeks. The hospital team was prepared for her birth and Mayah was quickly whisked away to be intubated and placed on highly invasive ventilation support. Seeing their baby hooked up to wires and machines in the NICU was a scary and difficult time for the couple. “It was far from the joyous thing it should have been,” Angie recalls. Doctors did not expect Mayah to live long after birth, but she defied the odds for the first of many times.

At 10 days old, Mayah was transferred from the NICU to a different children’s hospital to prepare for a tracheostomy. “The tracheostomy was a blessing, even though it was terrifying at first. It ended up being the best thing for her,” Angie shares about the trach Mayah received when she was 14 days old. It allowed Mayah to stabilize and grow. Mayah remained in the hospital because she was on such high doses of sedation and continued having “blue” episodes requiring immediate medical attention to bring her oxygen levels back up.

At four months old, Mayah contracted a life-threatening respiratory virus. Angie and Ryan were called to the hospital and were told that Mayah was not going to make it through the night. Doctors put Mayah on a different mode of ventilation to fight the virus and weaned her off the high doses of medication that were keeping her in the hospital. Mayah defied the odds once again and overcame the illness. Weaning her off the high doses of medication was the final step toward bringing Mayah home.

After six months in the hospital, Mayah was finally discharged to go home to join her family. She came home with a trach, ventilator, g-tube, and casts for clubfeet treatment. Home health care was very limited in the beginning and Angie and Ryan were responsible for caring for Mayah, adapting a room of their house into a hospital room. “At first it was scary taking care of our baby that was so fragile. We have grown so much as a family from this experience and now its second nature,” Angie explains. The family was given Mayah’s official diagnosis around her first birthday and learned that the infant mortality rate was 95%.

Mayah has undergone several surgeries. One of the most difficult of Mayah’s surgeries was a jaw distraction just before her third birthday. Mayah was born with a recessed jaw, which made it difficult for doctors to access her airway during annual bronchial scopes to follow the progress in her trachea. Surgeons broke her jaw on both sides and implanted hardware, which Angie and Ryan had to crank twice a day for about two weeks to expand and pull the jaw forward. The hardware was removed after three months and a few centimeters made a huge difference in Mayah’s life. Prior to surgery, Mayah was eating through g-tube feedings and after surgery she was able to start eating by mouth. Within a year, she was g-tube free. The surgery also gave doctors the extra room needed during her routine scopes.

Another one of Mayah’s life changing surgeries was the creation of an ACL when Mayah was 4 years old. Mayah was born without an ACL, which is not typical for her diagnosis. The family traveled to Akron Children’s Hospital for surgery with an expert surgeon in this field. The skilled surgeon harvested the iliotibial band from Mayah’s thigh and wrapped it around her knee to create an ACL. Angie explains, “Because it’s her own living tissue, it will grow with her. There’s no risk of rejection because it is hers and it will grow with her so there’s no need to replace it down the line.” Before surgery, Mayah had the desire to walk but physically could not because her leg would buckle without an ACL. The surgery gave Mayah the ability to walk unassisted and once she healed and gained strength, she took off. She loved being able to walk around and play with her siblings. “It was amazing. It changed her life,” Angie shares.

Mayah recently underwent cervical spine surgery, which unexpectedly turned out to be lifesaving. Mayah began to struggle with balance and falling while walking. Angie had a feeling something was off. Then Mayah began to gag while eating. After ruling out ear infection, food allergies and medication side effects, Angie’s instinct grew stronger that something was going on. She remembered a brain and cervical spine scan Mayah had years ago. At the time, there was no sign of concern, but doctors told them to follow up with any signs of regression. This was a lightbulb moment for Angie, and they scheduled an MRI with their neurosurgeon. Angie’s intuition was right and two weeks later, Mayah had spine surgery. During the operation, the surgeon not only corrected the cause of the walking issues but also discovered a ligament that was strangling Mayah’s spinal cord. The surgeon was able to correct it and save Mayah’s life. Mayah defied the odds once again and was walking two weeks after surgery.

Mayah is the only one in the world with her exact chromosomal abnormality and there is not a blueprint for her care. Seeking wisdom from experts and traveling for specialized care has been critical in Mayah’s medical journey. The family is planning a trip to Wilmington, Delaware for care from top specialists in the country for Mayah’s worsening spinal condition.

At five years old, Mayah’s smile and positive attitude make her the epitome of happiness and joy. She spreads joy at preschool, on the softball field and during her monthly adventures with her “A Kid Again” group. “Mayah captivates everyone. She inspires people. She brings out the goodness in people,” Angie beams about their Miracle Mayah.

Time to get loud shouters!

Throughout the month of April we will be shouting loud for Mayah!

So click here to shop now where every purchase in April will help cover travel expenses for specialized medical care for Mayah. To help support kiddos like Mayah every month, click here to start a monthly subscription.