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Owyn is One in a Million

Illinois girl reaches a hand out to kids around the globe who share extremely rare diagnosis.

Everything has a place in God’s plan. That’s the belief system Matt and Tiffany have modeled for their family, including when their daughter was born with a rare syndrome that annually affects less than one in a million children worldwide.

When Owyn was born, everything appeared completely normal. However, when the nurse put Matt and Tiffany’s tiny baby on the cold scale to be weighed, her left hand opened. It unclenched. The nurse instantly recognized something unique: Owyn was born with four extra fingers on her left hand but was missing a thumb.

“It’s a lot to comprehend in the moment. At that point, we’d already parented three other children. So, when out of left field, you’re thrown this curveball: ‘Here’s an abnormality.’ It’s very rare so it even took a while to get diagnosed,” said Matt.

A diagnosis of ulnar dimelia, or mirror hands, finally came once Owyn was referred to Shriners Children’s St. Louis and Charles Goldfarb, M.D. After an initial assessment, Goldfarb set out a simple goal: to make the hand as functional as possible.

As parents, they had to let go of what they expected to be “normal” for Owyn.

“Out of eight fingers, she wasn’t going to have four fingers and a thumb. Dr. Goldfarb walked us through valuing functionality over beauty,” remembered Matt.

“One challenge with the birth of any child with a congenital difference is the concept of the loss of the ‘perfect’ child. We all want our children to be perfect. Families have to come to grips with this and our counseling is only a small part of this process. Of course, with time, we all realize that function is the most important requirement. Conversations get easier with time, especially as families realize that their child is going to do well,” explained Goldfarb.

owyns hands

When she was 14 months old, Owyn went into surgery for amputation and pollicization, a process that allows surgeons to create a thumb by transferring a different finger into the thumb position.

Owyn left the hospital with a much less crowded left hand that was exceedingly more functional. Instead of eight fingers, she had three fingers and a brand new thumb. Within three weeks, Matt and Tiffany witnessed her using that hand more efficiently – even if it was just her tiny fingers sticking out of a bulky cast.

Then, when she was 2, Owyn had a second surgery to straighten her wrist.

Ulnar demelia can also affect the elbow, causing Owyn to have limited range of motion. In the future, Owyn can choose to have that surgery – or not. Her parents have given Owyn the option.

“Every affected child is different. Some have no elbow or forearm motion. Some have normal elbow and forearm motion. Almost all have the wrist in a flexed (bent) position. The hands are also very, very different. That might include the number of fingers, but also must consider how well the fingers function and what the potential is for improvement in time,” explained Goldfarb.

A little girl with a big sense of humor, Owyn jokingly calls her left hand a dinosaur claw! She loves her uniqueness and, as a Patient Ambassador for Shriners Children’s St. Louis, she’s had the opportunity to share that confidence with other people.

I’m confident in who I am. My doctors, nurses and friends help me to feel confident.
Owyn, St. Louis

She’s finishing up fifth grade and loves acrobatics, basketball and soccer – even performing as a munchkin character in the local high school production of The Wizard of Oz.

Throughout this medical journey, Owyn’s family continues to lean on its faith for strength and guidance.

“There was nervousness and anxiety. But, there was also a possibility that God could use this in a mighty way,” said Matt.

Matt and Tiffany believe God answered their prayer, allowing them to bless other families from all around the world who are facing the same diagnosis. Social media has created a channel for them to support families seeking answers.

However, the relationships have grown far beyond a global virtual support system. Matt and Tiffany have welcomed these families, some international, into their home for dinner. They’ve attended doctor appointments with these families and their children, even sitting with parents during their child’s surgery. Most importantly, they put people’s minds at ease.

“We had never planned for this. It has created a family. This rare condition that these children have, it connects us on a deeper level, almost instantly, when we begin to talk with them,” said Matt.

The connection continues as these kids grow up. The group on Facebook allows the grown-up kids an opportunity to share how they adapt with limited range of motion in an elbow or with a unique number of fingers, for example. Washing hair or making a ponytail are two popular subjects.

“In watching Owyn interact with anybody, or do flips, or play basketball, it’s easy to see she’s having a normal childhood. Her confidence in attempting new things isn’t held back because she only has four digits,” Matt said.

Owyn's Confidence Radiates

With a functional hand, the sky is the limit for Owyn.

owyn with her dad and dr. goldfarb

Owyn, her dad and Dr. Charles Goldfarb

baby owyn showing her hands

A proud toddler, Owyn shows off her new hand.

owyn holding a book

Owyn was invited to write the foreword for a published book.

owyn smiling with family

Owyn with mom and dad at the 2022 telethon

owyn in her dress

Owyn dresses up for Night of Superstars.

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