Page 42 - SHRINERS HOSPITALS FOR CHILDREN OPEN PROGRAM 2017

News | PATIENT AMBASSADOR

Emily was born with spina bifida, as well as severe scoliosis,
missing eight ribs on her left side, a leg-length discrepancy
and an extra big toe on her left foot. Her left hand was
contracted and she had minor bladder and kidney issues.
She also has Horner’s syndrome, which presents with a
lower drooping left eyelid, pupil size discrepancies and the
inability to sweat on the left side of her face.

When she was 6 weeks old, Emily had surgery to close the
defect over her spinal cord. The following day, a long list of
serious complications began, keeping Emily in the hospital
for 28 days. During this time, the Mellishes received a
message from a close friend letting them know about
Shriners Hospitals for Children and that Emily could be
seen there once the family was ready. “At the time, I did not
know what she [her friend] meant but it was comforting to
know that even before I needed to worry about a place to
take her orthopaedically, that someone had come forward
and said the there was a place where Emily would be taken
care of,” said Joy.

Finding the Right Team
Emily was first seen at Shriners Hospitals for Children –
Erie when she was approximately 6 months old, after she
had completely healed from her initial surgery. The medical
team at the Erie Shriners hospital initially recommended
both a tethered cord release and a VEPTR (Vertical
Expandable Prosthetic Titanium Rib) procedure, which
involves attaching a curved rod to her spine to stabilize
the curve. These were performed through collaboration
between Shriners Hospitals for Children and Children’s
Hospital of Pittsburgh. Since then, she has had biannual
back surgeries to lengthen the rod (and replace as needed).

Emily has been seen at Shriners Hospitals for Children in
both Erie and Philadelphia. At the Philadelphia location,
external fixators were used to straighten Emily’s leg at the
knee, and increase leg length, resulting in an increase of 4
inches that decreased her shoe lift by half. After recovery,
Emily was able to ride a bicycle for the very first time. Emily
has had 27 surgeries in her lifetime, and always amazes her
doctors with her abilities and her “no limits” attitude.

Giving Back with Beads for Needs
Today, Emily is an energetic and sociable 12-year-old. She
loves dancing, swimming, painting pottery and public
speaking. Emily’s appreciative attitude led her to establish
Beads for Needs in 2012, a charity dedicated to raising
funds for Shriners Hospitals for Children through bracelet
and photograph print sales.

40 November 2- 5, 2017 | TPC SUMMERLIN | LAS VEGAS, NV