Matthew Lance loves to ride his three-wheeled bike. He loves the school bus so much his bed is shaped like one. He loves pictures and videos of himself, Christian worship music, banging on his step-dad's drums, his two pet Yorkies and playing Miracle League baseball. If you're his friend, it is an absolute certainty he will at some point "steal your nose" -- or your ears, or your hair.
"He has a silly sense of humor," his mom, Regan Sheets, says.
Matthew, who is 14, also has something no one else in the world has. Arkansas Children's Northwest describes it as "a rare combination of diagnoses related to an extra chromosome that isn't documented anywhere else in medical literature."
"Matthew is an absolute light and is cared for by multiple Arkansas Children's specialists -- our craniofacial experts, gastroenterologists, neurologists, geneticists and surgeons among them," says ACH spokeswoman Hilary DeMillo. He is "literally one of a kind."
Matthew is the regional star of a national touring art show that runs through Sept. 29 at Arkansas Children's Northwest. Organized by the Rhode Island-based nonprofit Beyond the Diagnosis, the exhibition brings together 40 paintings of children who have rare diseases.
"There are 7,000 rare diseases," according to the organization's website. "Rare diseases became known as 'orphan diseases' because drug companies were not interested in adopting them to develop treatments. Less than 5% of all rare diseases have a treatment. There are no cures. People living with orphan diseases experience long diagnosis times, few medical experts, no treatments, financial hardship, and emotional stress.
"Each portrait represents a single orphan disease," the website continues. "Our goal is to put a face to all 7,000 rare diseases. This beautiful exhibit is traveling to medical schools, research institutes, hospitals, galleries and museums around the globe encouraging the medical community to look 'beyond the diagnosis' to the patient."
Matthew's portrait -- the first of a Northwest Arkansas child to be included in the exhibit -- was painted by Diana Shearon, who splits her time between Bentonville and North Little Rock.
"I am passionate about art and painting, and found Matthew's resilience a natural for translating onto canvas in bright, joyous colors," says the artist, who has had her work shown at P. Allen Smith's Moss Mountain Farm, the Rice Gallery of Fine Art's third National Juried Plein Air Exhibition and the Memphis Germantown Art League's 41st annual Juried Star Exhibition. "I loved learning about how his tricycle has brought such joy to Matthew, which is why I incorporated the wheels in this portrait.
"Having been a former baby rocker at ACH in Little Rock, I was very familiar with all of the wonderful work the hospital does in the community and the services it provides," Shearon adds. "Beyond the Diagnosis foundation's inspiration to develop a body of portraits focusing on children with rare genetic disorders was inspirational."
Matthew's mom remembers clearly the moment those genetic disorders changed her life forever. It happened when a ultrasound at her 20-week checkup -- intended to tell her whether she was having a boy or a girl -- instead revealed that Matthew was missing a piece of his brain that connects the two hemispheres. She says while he understands a lot of what is said around him, he is largely nonverbal and probably doesn't understand "he's that much different than anybody else."
"His perspective on life is more innocent and pure," she says. "He just enjoys his life."
FAQ
'Beyond The Diagnosis'
WHEN -- 8 a.m.-8 p.m. through Sept. 29
WHERE -- Arkansas Children's Northwest in Springdale
COST -- Free
INFO -- beyondthediagnosis.org
FYI -- Enter through the main hospital entrance and bring your government issued I.D.
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Look Here!
See a video about Matthew produced by ACH at nwaonline.com/924matthew/
Also depicted are Arshaan and Jahan. (Courtesy Image)
FAQ 'Beyond The Diagnosis' WHEN — 8 a.m.-8 p.m. through Sept. 29 WHERE — Arkansas Children's Northwest in Springdale COST — Free INFO — beyondthediagnosis.org FYI — Enter through the main hospital entrance and bring your government issued I.D.
OLYMPUS DIGITAL CAMERABrody is depicted with a pet. (Courtesy Image)
This is Case. (Courtesy Image)
Artist Diana Shearon looks at his portrait with subject Matthew Lance. (Courtesy Photo)
Matthew Lance and his mom, Regan Sheets, see his "Beyond the Diagnosis" portrait for the first time Sept. 19 at Arkansas Childrens Northwest. The exhibit, stopping at ACH through Sept. 29, gives faces to some of the 7,000 rare diseases that challenge children. (Courtesy Photo)
Eighty percent of rare diseases are genetic in origin, and thus are present throughout a persons life, even if symptoms do not immediately appear. This is Khai. (Courtesy Image)
Artists have donated their time and talents to paint rare disease patients for this groundbreaking exhibit. Each portrait represents a single orphan disease. The goal of "Beyond the Diagnosis" is to put a face to all 7,000 rare diseases. This is Madeline. (Courtesy Image)
Diana Shearons portrait of Matthew Lance makes him the first Northwest Arkansas child depicted in the "Beyond the Diagnosis" exhibit. The wheels represent his love for riding his three-wheeled bike. (Courtesy Image)
Thirty percent of children with a rare disease will not live to see their fifth birthday. This is Naylah. (Courtesy Image)