SHC Community

A Rare Connection

Madelyn and Keira, who found each other over social media, share the same limb difference.

Patients share the same rare condition – and so much more

Keira and Madelyn were both born with the same rare condition, congenital absence of the left arm. Treated at different Shriners Children’s locations – Keira in Philadelphia and Madelyn in St. Louis – and with 15 years between them, it wasn’t likely that the two would ever cross paths. And yet seven years ago, the unlikely happened. Thanks to the power of social media, their mothers Jessica and Melissa connected, and a special bond between the pair began. The connection is an example of how Shriners Children’s patients find much more than amazing care within our walls.

Finding your match

The girls meet for the first time when Madelyn makes a surprise visit to Keira’s home.

Despite their age difference, the girls share many similarities. Keira, 8, is often described as 23-year-old Madelyn’s mini-me. Those similarities have allowed them to find someone who can relate to their daily experiences. Over the years, the girls and their moms found support in each other, but only through messages and video calls. Until recently. The fated friends were finally able to meet in person through Shriners Children’s and the Lucky Fin Project, an educational resource and support network for families of children with limb differences.

“Meeting Keira in person was one of those moments that was incredibly hard to put into words because there is genuinely an immense amount of joy in meeting someone who looks just like you, after knowing each other for years but being separated by distance,” said Madelyn. Keira said she was excited when she saw Madelyn and happy that they could meet in person.

Spreading the word

The most special part of the visit was their opportunity to speak together at Keira’s school. During the presentation, the girls shared their stories and educated students about braces and prosthetics. “Keira’s self-confidence was evident as she stood with Madelyn in front of the large group of students, something she never would have done before!” said Keira’s mom, Jessica.

The girls and their moms truly love celebrating one another, and they especially love celebrating all of their accomplishments together.

“Keira lit up when she saw Madelyn and immediately ran to her like she had known her forever. You would never know this was their first meeting in person,” said Jessica. “That is a true testimony of the connection of the Shriners community.”

“Not many individuals are born completely missing their left arm, and knowing that Keira is able to see someone who looks like her is a delight,” said Madelyn. “There is so much valuable knowledge in the living experience that each of us has with various disabilities, and it means the world to me to pass on that information to make a positive impact.”