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Lily and Brayden

Lily and Brayden

Best friends Lily and Brayden think they’re having a play date. Really, it’s an occupational therapy (OT) session at Shriners Hospitals for Children — Greenville.

Both girls were born with arthrogryposis multiplex congenita (AMC). Arthrogryposis is a nonprogressive muscle disorder causing stiff joints and an overall lack of muscular development. Children with AMC are born with a deformity of the joints and a limited range of joint motion.

Brayden and Lily receive care at both the Greenville Shriners Hospital and Shriners Hospitals for Children — Philadelphia. Since the hospitals specialize in pediatric orthopaedics, in particular rare disorders like AMC, it is not uncommon for families with similar diagnoses and treatments to meet. For families, these special connections are priceless.

“Meeting other families who are walking the same path as you, caring for a child with the same unique challenges is worth its weight in gold,” said Lily’s mom Kelli. “Knowing there are other parents in the world whose heart beats the same rhythm as yours is priceless. We can talk, compare and provide support and ideas to each other that other families would not understand.”

As a part of the care plan, the staff at the Greenville Shriners Hospital sees making connections with other families as a way to help families learn more about their child’s care and treatment.

“The ladies in occupational and physical therapy have a way of scheduling appointments so if there is a family that could benefit from meeting another, it puts you in the right place,” said Brayden’s grandmother or "Meme", Dawn. “It is left up to the individual to make contact with the other family, but it gives you the opportunity to do so.”

The girls first met at the hospital during their therapy sessions. Lily would be seeing her physical therapist at the same time Brayden had occupational therapy. The girls started talking and watching what the other one was doing. Lily was a great teacher for Brayden.

“Children learn from watching and then trying it with their own adaption,” says Dawn. “We all love to know how we can help our kids, and learning from someone who is living it is the best way.”

It was Lily who gave Brayden the confidence to walk for the first time by herself.

“Lily kept telling Brayden she could do it,” Dawn describes. “Finally she did!  And, Kelli gave me the confidence to let Brayden go. I had to let her fall so she would know she can get back up and keep going,”

“I truly believe the girls know they can freely be who they are when they are around each other without reservation because they share similar challenges,” Kellie adds. “They help each other figure out how to overcome obstacles. They can be their sassy little persona and know they are accepted and loved by the other. We are so thankful for Dawn and Brayden and the love and acceptance that they provide Lily and me. They are what I would consider dear, lifelong friends.”

About Lily in her mother Kelli’s words…

We are so thankful for Shriners Hospitals for Children and how they have helped Lily improve her quality of life since we brought her home in November of 2013. She had surgery on her right arm, which allows her to reach her face. Watching her touch and rub her own face for the first time is a precious memory I’ll always cherish. Lily is also wearing leg braces, which are not her favorite, but they have greatly improved her gait allowing her fewer falls which in turn, allows fewer scrapes and bruises. She receives therapy from her amazing therapists every other week at the Greenville Shriners Hospital.

Shriners Hospitals for Children has meant so much more to our family outside of the wonderful orthopaedic care and therapy that Lily has been provided. It has also allowed our very special daughter the opportunity to be loved and cared for by some of the most amazing people we have ever met. She is a Shriners’ star every trip we take into the hospital.

Shriners Hospitals for Children is everything but a sterile hospital environment. They are an organization that has created an atmosphere that allows some pretty amazing children a spotlight where they can shine. The employees and Shriners both do whatever they can to make our princess feel like a true princess. In fact, when we drive past Shriners [Hospital], Lily says to me, “Mommy, there’s MY Shriners”, as if she owns it!

One thing I did not expect was the impact the hospitals have had on my other children. My oldest son has started work on his Eagle Scout project, which will benefit the therapy department. My middle son has decided that he wants to become an occupational therapist and work with children when he gets older. All three of them have expressed interest in possibly becoming Shriners one day to help raise funds for the hospitals.

Meet Brayden in her Meme Dawn’s words…

Brayden came to live with her meme in late 2013 and started coming to the Greenville Shriners Hospital for physical therapy.

When Brayden came to live with us I was really lost and unaware of where to go except Shriners Hospitals for Children. Brayden was so tiny when we first started at the Greenville Shriners Hospital. Suzanne (physical therapist) and Lisa (occupational therapist) were our lifeline for the first couple of months. We came twice a week for months. Now, I wonder if those visits were more for me than Brayden. I believe they were helping me have faith that I could take care of her.

When Brayden first came to us she had been laying so much as a baby that we even had to work on lungs and cardiovascular exercises to give her the strength to even play for just a short time. Before starting therapy at the Greenville Shriners Hospital, Brayden had never even placed weight on her legs. After a few months of therapy and some new braces, Brayden began walking with assistance.

She has also had a remarkable change in use of her hands too. Surgery to rotate her left arm earlier this year has enabled Brayden to see that she had two hands. She is starting to use a hand that she never used at all.

All of the staff make Brayden and I feel like family. We are scheduled for an hour each week but are always there for three or four hours at least. I don’t know what we would do without this hospital or the staff.

Meet some of our other special patients.