Meet Matthew Lance

At her 20-week ultrasound, Regan Sheets knew that her son, Matthew, would be born unique. The sonogram detected a portion of Matthew’s brain was missing. He was diagnosed with Agenesis of Corpus Callosum, a rare genetic disorder where he is missing the membrane between the two hemispheres of the brain.

 

“When he was born, I was waiting to hear his sweet baby cry, but there was nothing... silence.  The silence was interrupted by the doctor yelling, ‘where is the pediatrician?’ this baby has issues.” 

Matthew spent the first week of his life in a neonatal intensive care unit. He was diagnosed with Goldenhar syndrome, a congenital disorder that causes abnormal development of the face and spine. Matthew was born without an ear, a submucous cleft palate and failure to thrive. 

For the first year of Matthew’s life, Regan would make the trip from her home in Northwest Arkansas to Little Rock numerous times. Matthew was seen by specialists from the ear, nose and throat (ENT) clinic and the gastroenterology clinic at Arkansas Children’s Hospital.

At six-months-old, the genetics team at Arkansas Children’s Hospital Clinic in Lowell discovered Matthew has an extra chromosome and chromosomes 7, 8 and 22 formed into one chromosome. Of all the rare chromosomal anomalies in the world, Matthew is the only person in the world with this chromosomal disorder. Matthew had such an aversion to eating, it was determined by his first birthday that a gastronomy-tube in his stomach would be necessary in order for him to receive the nutrients to survive. 

“There is no road map for Matthew’s condition,” explains Regan. “His care team at Arkansas Children’s didn’t put limitations on Matthew. He’ll meet milestones at his own time.”

Thanks to donors like you, Matthew is able to receive care close to home at Arkansas Children’s Northwest. In January, Matthew had surgery to complete a metal snap on the side of his head for his new prosthetic ear. His ENT specialist from Little Rock was able to perform the surgery in Northwest Arkansas

“To be closer to home is a big deal,” explains Regan. “Arkansas Children’s Northwest caters to children-it was nice to have the focus on kids. One day when he was really tired of being in the hospital, we put him in the wagon and walked around the hospital and toys kept showing up.”

Matthew uses sign language, his hearing aid and his iPad to communicate. He loves all things that move like cars and buses and he loves to play with his dog, Cookie. He also loves riding his bike and playing baseball. 

“The older Matthew gets, the more he can express himself,” says Regan. “Every milestone, even if it’s three years behind schedule, is a gift. When he learns a new word, we get really excited. Moments like that are exciting and unexpected.”

As a private brand Senior Sourcing Manager with Walmart, Regan has found a way to give back to Arkansas Children’s. Since 2012, Regan has worked to raise awareness and provide funds for Arkansas Children’s through Children’s Miracle Network Hospitals (CMNH), a North American non-profit organization which provides funds supporting children’s hospitals and pediatric research. 

Since 1983, Walmart has provided nearly $1 billion in philanthropy to pediatric hospitals through CMNH.

“My team and are I are really excited about supporting our local CMN Hospital, Arkansas Children’s, said Regan. “We have a passion for giving back and I grateful to work for a place that supports kids.”

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