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Rare Disease Day 2023: Keira and Hannea's Journeys at Shriners Children's

Keira and Hannea found their homes away from home at Shriners Children's Philadelphia while receiving care for their rare medical conditions.

While some patients need basic care at our hospital, others face more complex conditions that require care over months and even years.

Patients and their families tell us that Shriners Children’s Philadelphia feels like a second home because we care so deeply for them physically, emotionally and socially. Meet Keira and Hannea. Both found the most amazing care for their rare medical conditions.

Meet Keira

When Jessica and her husband, Aaron, went to the doctor for their 20-week anatomy scan, they found that their daughter would be born without her left arm at the shoulder. After taking the necessary time to process, they determined a care plan for after birth. When she was 2 months old, Keira had her first visit with Scott Kozin, M.D., chief of staff, who assured them that they were in a great place.

One year later, leading up to their annual follow-up appointment at Shriners Children’s, the family noticed that Keira’s back was very tight but thought it may have been because of her condition and lack of left arm. Raising their concerns, they were sent to radiology for spinal X-rays. Josh Pahys, M.D., orthopedic spine surgeon, determined that Keira also had progressive infantile scoliosis. Within a few hours, the team set her up with an immediate treatment plan, which would have taken months to receive back in their rural hometown in Virginia.

Keira’s initial treatment plan for her scoliosis included an MRI, spinal cord detethering surgery and mehta casting. After a series of about 12 casts, it was time to switch to a Wilmington brace, also known as thoracic lumbar sacral orthoses (TLSO), which she continues to wear today. Another convenience for the family is the on-site pediatric orthotics and prosthetic department. That is where her custom brace is fitted and molded.

Keira visits Shriners Children’s Philadelphia every six to eight months for follow-up appointments, and she feels like part of the Shriners Children’s family.

Now in first grade, Keira loves sports, drawing, singing, music and swimming.

We felt like part of the family from day one. We left that first appointment knowing we were going to be just fine with the medical team at Shriners fighting by her side. I will forever be grateful for the life they have given our girl.
Keira’s mom, Jessica

Meet Hannea

Hannea first came to Shriners Children’s Philadelphia when she was 7, and was diagnosed with Parsonage-Turner syndrome with right brachial plexus neuritis. This condition causes severe and sudden pain in the arm and shoulder. For Hannea, this left her right arm paralyzed and affected her ability to perform everyday activities. After surgery with Scott Kozin, M.D., and therapy, Hannea has regained movement and can now perform various activities, some that she had been unable to do since she was 7.

“As I look back, I believe this happened to me for a reason,” said Hannea. “I wouldn’t go back and change anything. I want to help others by sharing my rare reality, my journey. There are so many different rare diseases, we never know what those dealing with them are going through, physically or emotionally.”

Now in college, majoring in social work and dance, she has a passion for helping others and hopes to work in a hospital setting to support and empower people with disabilities.

“We may not have the answers, but we can help by standing by someone going through the journey. Kindness, compassion and caring can make such a difference," said Hannea. "I highly encourage everyone to do research, spread awareness and, most importantly, be kind. Let’s recognize their uniqueness and celebrate it today and every other day of the year.”

Hannea is also a Patient Ambassador and is currently working on a special project where she hopes to be a resource to support individuals who share similar experiences.

While Rare Disease Day is marked February 28 on the calendar, Shriners Children’s provides care to Kiera, Hannea and many other children with rare medical diseases every day of the year. We’re often told that patients don’t feel different at Shriners Children’s because they see so many others like themselves when they are here for an appointment.

To learn more about the care provided at Shriners Children’s Philadelphia, visit us. To make an appointment, call 215-430-4000.

Meet Hannea and Keira

Both patients at Shriners Children's Philadelphia were diagnosed with rare medical conditions.

patient posing for dance photo

Hannea posing for her professional dance photos

Hannea in front of hospital

Hannea at her first appointment at Shriners Children's Philadelphia when she was 7

patient representing shriners children's

Keira representing Shriners Children's in her hometown in Virginia

patient during her appointment

Keira during her appointment at Shriners Children's

Keira with mom during T-ball game

Keira with her mom, Jessica, during her T-ball game

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