Elle Hariton: An Inspiration

Elle Hariton is proving once again that a mother’s bottomless love and  patience combined with a child’s determination and resilience can work miracles.

Elle was born  in February 2008, six weeks early and not as responsive as other premature babies. The infant’s lack of muscle tone persisted; so Elle’s pediatrician ordered physical therapy.

At her first appointment, the therapist found Elle had a dislocated hip, unexplained by injury. Eric Loveless, MD, pediatric orthopedist at Wolfson  Children’s Hospital and Nemours Children’s Specialty Care, determined the hip dislocation was present at birth. “I immediately connected it to a neurological problem,” recalled Loveless. While he began planning hip surgery, Lori made  an appointment for Elle with Wolfson and Nemours neurologist Raj Sheth, MD.

Before the appointment or hip surgery took place, Elle had a grand mal epileptic seizure. “She looked like she was in a coma. She was stiff:expressionless,” Lori said. Rushed to
\,Yolfson’s emergency room, she was given MRI and  CT scans. Sheth’s diagnosis was grim. Elle had lissencephaly, an extremely rare brain disorder that affects just one in 30 million.

The brain  begins to form in the second month of pregnancy, and newly created seminal neurons migrate to predestined locations, where they multiply and assume specialized roles. In Elle, many of these neurons failed to migrate and multiply. The parts missing  from Elle’s brain  control motor abilities, language development and  emotional control. Simply put, no specialized brain  cells exist to send instructions to the body’s  muscles, or to retain and  process information. The disorder is also called “smooth brain” because  the brain  has fewer folds and convolutions than normal.

Other malformations caused errant electrical signals that trigger seizures. Another complication was cataracts, which caused  Elle to lose vision for six weeks when she was 2 years old. Nemours pediatric ophthalmologist Lee Hunter, MD, surgically implanted new lenses, restoring Elle’s sight.

In 2014, Elle was diagnosed with neuromuscular scoliosis due to her braids lack of neuromuscular neurons, without which muscles atrophy and cannot hold bones in place. It had progressed to a 62 Ofo curvature. Without surgery, her spine would have continued to curve until Elle was folded in half, stressing her heart and lungs. Loveless operated again, placing titanium growing rods along her spine. The rods will be lengthened every six months until  Elle is fully grown.

”The first couple of days were difficult since Elle is non-verbal and was unable  to tell us that she was in pain. We had to watch her heart rate and use that  as the indicator,” said her mother, manager at Ballard Designs in Town Center. “Nurses were amazing and so fast to respond when we needed them.”

Lori called the surgery life-changing. “Elle is able to sit up straight, without being hunched over and to the side.” Still, Elle needed more surgeries. On June 1, Elle underwent a three­ hour  operation with Loveless to correct her  displaced right hip. Loveless removed part of her femur, allowing the ball to be angled back into the hip socket, and secured the bones with pins and a metal plate. Elle will need yet another surgery to correct her left hip.

Looking for a way to give back to Wolfson by helping raise vital funds, Elle’s mother rallied friends and family to form “Team Elle” to run in the annual Wolfson Children’s Challenge, a fundraiser that includes a 55K ultra marathon and ultra  marathon relay. Team Elle completed its third Wolfson Challenge this year.

“Elle’s teams are made  up of amazing people who have supported and inspired us and play a role in Elle’s life,” Lori said. “This past year, we were honored to have Women’s Board president and friend Grace Sarber  become a forever member of Team Elle!Elle is looking forward to registering four teams with 40 runners in 2017!”

Friends say Lori is one of the most incredible mothers they have ever known-one who serves as an inspiration to many. Lori also gives back to Wolfson  by volunteering at the Art & Antiques Show and is on track to join The Women’s Board.

Elle has achieved far more than experts expected. She taught herself to crawl using her elbows to pull her body along. She can pull herself onto a couch and into a sitting position. “Those are things that she taught herself,” Lori said. “That took intelligence.”

“We are so grateful for Dr. Loveless, his team and for Wolfson. They have greatly  improved Elle’s quality of life. At first I didn’t see hope, I didn’t see inclusion. But Elle had other plans. Her story isn’t  told because she ran the fastest or threw the farthest, scored  the highest or physically helped someone in need. It is told because, without words, my little girl has inspired many.”

Elle’s spine before surgery.

elle’s Spine after surgery.

 

 

 

 

 

 

 

by Lane Welch

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