Nothing Stands in 5-Year-Old Elly’s Way

Elly is like many other 5-year-old girls.

She loves Disney princesses, Miraculous Ladybug, Bluey, art and playing outside. She also loves to ride her bike, given to her by the BikeFit program at Shriners Children’s Northern California. But this bike is extra special – it was made just for her to accommodate her abilities. Elly has one leg that is shorter than the other.

Since she was a baby, her parents knew she needed treatment, but weren’t sure what path to take. Elly’s mom, Diane, met someone whose grandchild received treatment at Shriners Children’s for burns. They highly recommended she take Elly to Shriners Children’s.

Diagnosing a Rare Condition

Elly was diagnosed with a rare condition called proximal focal femoral deficiency, in which the upper part of the femur bone is either malformed or missing, causing one leg to be shorter than the other. In Elly’s case, this means she has a congenitally poorly developed hip and very short femur. She uses an extension prosthesis to equalize her leg lengths.

From the time she was one and a half, every six months Diane brings Elly to Shriners Children’s so her medical team can monitor her growth and review her treatment options.

“She may be a surgical candidate in the future,” said Shriners Children’s Northern California orthopedic surgeon Joel Lerman, M.D. “Though, some patients with her condition continue to use an extension prosthesis, like she is presently using, for the long term.”

Here, Elly isn’t just a number, we can put complete trust in Shriners Children’s advice and recommendations.
Diane, Elly's mom, Northern California

Finding a Supportive Team

“One of the main reasons we love Shriners Children’s is because they are a children’s hospital,” said Diane. “They have Elly’s best interests [at heart], and the doctors are very real and supportive. They make us feel like we’re getting her the right care and doing the right thing as parents.”

Because of Elly’s leg difference, she participated in a gait study, or motion analysis.

As a child grows and develops, so does their ability to move. When a child has a condition that changes typical development and makes movement difficult, advanced diagnostic techniques may be necessary to fully understand what is causing challenges. That’s where motion analysis comes in.

During a session in a motion lab, analysts explore a patient’s ability to walk, run, bend and twist; and even how they swing their arms. Shriners Children’s state-of-the-art motion capture camera system records a child’s movements through reflective markers placed on their body. Once the information collected is analyzed, the motion analysis engineers partner with the patient’s care team to share the data and together, determine a care plan.

Discovering the BikeFit Program

During a routine visit, the technicians in the motion analysis center thought Elly would be a strong candidate for the hospital’s BikeFit program. BikeFit helps kids who are unable to ride a standard two-wheel bike enjoy the same physical and mental benefits as other children as they learn to ride custom adaptive tricycles, given to patients free of charge thanks to generous community donations. For her fifth birthday, the only thing she wanted was a bike with pedals, and Elly got just that!

“We’ve always felt humbled when we come to Shriners Children’s,” said Diane. “I’m always blown away by the generosity.”

Today, Elly runs, bikes and plays right alongside her peers, thanks to the medical equipment and care she has received at Shriners Children’s. Elly’s zest for life is evident everywhere she goes, and her family is thrilled with her progress.

“Here, Elly isn’t just a number,” said Diane. “We can put complete trust in Shriners Children’s advice and recommendations.”

Meet Elly

Elly has one shorter leg, but thanks to Shriners Children's Northern California, she is able to run, bike, and play.
View Transcript

[Shriners Children’s Northern California logo]

Speaker 1:

Can you tell him what it says?

Elly:

I am special because I have a short leg.

Speaker 1:

We found out very early on that Ellie has a condition called PFFD, which is proximal femoral focal deficiency. Came to Shriners when Ellie was about a year and a half, and that's when we first met Dr. Luhmann and his team. Coming to Shriners has always been a very welcoming experience. They've always made us feel like we were doing the absolute best thing possible for our little girl. It's absolutely incredible. For her fifth birthday, last March, the only thing she wanted was a bike with pedals, and Shriners was helping us with that and recommended her for the BikeFit program, which she participated in this summer, was a six-week program. They custom-built her a bike, worked with her, taught her how to ride a bike, and now she gets to ride that bike to school every day.

Shriners has helped us through this process, making us feel that we can just let Ellie live her life and become the strong, confident little girl that she has become. My favorite thing about going to Shriners is just how absolutely friendly everybody is. You walk around the corner and everybody greets you with a smile. You feel like you know everybody, feel like everybody knows you. It's very welcoming.

We're so grateful for everything that Shriners has done for our little girl and everything they're continuing to do for our little girl.

Can you tell them what that's a picture of?

Elly:

Card, house.

Speaker 1:

But what's on the picture? Is that Shriners?

Elly:

Shriners.

Speaker 3:

That's Shriners?

Speaker 1:

Is that where you got your bike?

Elly:

Thank you, Shriners.

[Shriners Children’s Northern California logo]

Meet Elly

With the care provided at Shriners Children's Northern California, Elly is achieving her dreams.

Elly on bike, with therapist

Elly with her physical therapist, Laura, trying her bike as a part of the BikeFit program

Elly with mom and dad

Elly with her parents, Diane and Charly

Elly wearing bicycle helmet

Elly wearing her pink helmet

Elly decorating Christmas tree

Elly with one of the four decorated trees for the hospital's Gift of Care event

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