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PCCSF Lends a Helping Hand at the 2017 MDA Muscle Walk

mdawalk Each day, everyday freedoms like walking, hugging, playing and even breathing are taken away from kids and adults in our community with muscular dystrophy, ALS and other related muscle-debilitating diseases.

The dollars raised to support those affected by these medical illnesses fuel MDA’s efforts to find research breakthroughs across diseases, to care for kids and adults from day one, and to empower families in hometowns across America with services and support.

This weekend, Pediatric Critical Care of South Florida is joining the Muscle Dystrophy Association in its annual Muscle Walk.

The annual walk gives residents from across the country the opportunity to unite around a cause that binds everyone together so that MDA can continue to enhance its support and care, offer the highest-quality programs and accelerate research efforts to bring more treatments to families faster.

The MDA Muscle Walk of Hollywood-Miami will take place this Saturday, October 28 at Charnow Park in Hollywood Beach. To register for the walk or donate to the cause, visit MDA.org.

PCCSF Treats Infant with Rare Immunodeficiency Disease

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Pediatric Critical Care of South Florida recently treated a patient suffering from an underlying immune deficiency disorder. The life-threatening diagnosis was discovered when the patient was just three months old.

Ryan Norton looks every bit a happy and healthy infant, a positive turn of events that his parents desperately needed.

Life is a little more normal for Sarah and Kevin Norton of Naples, yet their guard is always up for coughs and sniffles from anyone who comes into contact with Ryan. They want to avoid a new round of chaos.

Ryan, who will turn 1 next week, has a rare immunodeficiency disease called x- linked hyper IgM syndrome CD40L. It could land him back in a hospital on a ventilator and feeding tube, needing blood transfusions and antibiotics. He came home in late March after being hospitalized for all of those frightening interventions since mid-December. His parents never knew whether he would make it.

Ryan will have a bone marrow transplant, planned for next summer when he is a little stronger and older. His sister, Sophie, is a perfect bone marrow match. Sophie is 2½ years old.

The sibling match is a blessing that helps Sarah Norton, 27, and her husband, Kevin Norton, 29, stay upbeat that all should turn out well.

“We stay positive because we have to,” she said. “I wouldn’t be able to take care of him.”

She does Ryan’s immunoglobulin replacement infusions at home, and the family stays close to home to avoid Ryan being exposed to ill people. The sacrifices are hardest on Sophie who wants to go and do fun things, she said.

Finding more current research and medical information on Ryan’s condition also was difficult, Kevin Norton said.

The family has a good support network.

Sarah Norton’s parents live in the main house off Oakes Boulevard, with Sarah and Kevin in the guest house.

Publix has been a help — Kevin Norton is a grocery manager at the Publix at the Vineyards shopping center in North Naples.

Sarah Norton stays home now to take care of Ryan, but colleagues at her former job as manager of Pavilion Royal Scoop Ice Cream — near Paragon Pavilion theater in North Naples — did a fundraiser.

The couple has health insurance, but out-of-pocket expenses will mount when the bone marrow transplant gets done for travel and other costs. A GoFundMe account was established by Sarah Norton’s sister.

Broadly speaking, Ryan’s disease means part of the body’s immune system is missing or does not function properly, according to the Immune Deficiency Foundation in Towson, Maryland. These conditions are caused by hereditary or genetic defects. Some conditions affect a single part of the immune system. Others might affect more components of an individual’s immune system.

“He has a problem making the proper amount of immunoglobulins, which are vital for the body to fight infection,” Dr. Allan Greissman, a specialist with Pediatric Critical Care of South Florida at Joe DiMaggio Children’s Hospital in Hollywood, Florida. He admitted Ryan last December into Joe DiMaggio after he was transferred from NCH North Naples Hospital.

To read the full article, visit Naples Daily News.

PCCSF Saves The Life of South Florida Teen From Near-Fatal Flu

jenny-spell6Jenny Spell was rehearsing for her Florida high school’s production of The Sound of Music in 2014 when she started feeling achy and fatigued.

“I thought it was a common cold,” Jenny, now 18, tells PEOPLE. “During show season, there are lots of nasty germs spreading around and I thought I could beat it, but it just got worse and worse.”

The teen doesn’t remember much from the days that followed —only that her body “quit” on her and she found herself unable to move. Her mother, Ann Spell, took her to their primary care office in their hometown —  where doctors said she had flu-like symptoms.

“After three visits, she was eventually admitted to the ICU at a community hospital and I had to carry her in she was so weak,” Ann, a 53-year-old high school teacher in Loxahatchee, tells PEOPLE. “They immediately intubated her and started calling state hospitals to find a place that was equipped to handle necessary life support.”

Doctors and nurses informed Ann that her daughter would likely not make it through the night. They advised her to bring friends and family to the hospital to say their final goodbyes.

“I was preparing for her death,” says Ann. “It was terrifying, I can’t even express the pain I was feeling in that moment.

“My 16-year-old daughter was just running up the stairs earlier that week and now I was being told she wasn’t going to make it.”

Jenny was flown to Joe DiMaggio Children’s Hospital in Hollywood, Florida, where she was diagnosed with influenza by Dr. Gerald Lavandosky.

Read the full People Magazine story here.