Operation Save Megan

Kristina
Rolfes
August 1, 2014
A military dad requested and received a compassionate reassignment to Baltimore so his daughter can once again receive the expert care she needs for her rare genetic disorder at Kennedy Krieger.

Megan MiceliWith her big bright eyes, auburn curls, and contagious giggle, 6-year-old Megan Miceli is truly one in a million. You could even say she’s one in a billion— Megan has a genetic disorder so rare that only a handful of cases have been reported in the world. Since she was a baby, she has been under the care of neurologists at Kennedy Krieger who, after extensive genomic testing, diagnosed her with gene microdeletion 15q13.3.

This tiny piece of chromosome missing from her DNA affects nearly every aspect of her life. Megan’s medical problems are complex— aside from having low muscle tone, needing a feeding tube, and being unable to talk, she has suffered frequent seizure-like episodes that cause temporary paralysis on the left side of her body.

Despite these challenges, Megan made great progress under the care of Drs. Ali Fatemi and Alec Hoon, and physical therapist Megha Patel. As a toddler, Megan began gaining skills like sitting up and cruising along furniture, and after months of physical therapy, she took her first steps unassisted. Genetic counselors at the Institute worked with the family so they could understand what to expect with this complex disorder as she got older.

Megan Miceli with her family

The Micelis had eased into a confidence about Megan’s care, knowing that she was in good hands at Kennedy Krieger. But when Megan’s father, Nick, who is in the army, received a reassignment to Ohio, the family began to worry.

An Unexpected Setback

Nick recalls the concern they had about his military relocation to Ohio, hundreds of miles from Kennedy Krieger. “You wonder if she will get the same high quality care, attention to detail, and compassion we received at Kennedy Krieger… You know deep down that it is impossible to replicate.”

As it turned out, their fears were not unwarranted. After the family moved to Ohio, Megan acquired mastoiditis—a serious infection of a bone behind the ear—and became very sick. After that, she declined to the point where she couldn’t even sit up.

Her new doctors in Ohio had never seen a disorder like Megan’s, and since her case was so complex, they didn’t know how to treat her. To make matters worse, Amie was not able to get Megan physical therapy appointments, and she felt like the doctors weren’t listening to her. Megan was in and out of the hospital for eight months, suffering from seizures and not getting the treatment she needed.

Operation Save Megan

Through it all, Dr. Fatemi stayed in touch with the Micelis about Megan’s care. Amie had a hard time getting Megan’s new doctors to talk to her, but when she called Dr. Fatemi, he always made time to listen and offer medical advice.

“One of the most important things we can offer, aside from expertise, is being readily available for our patients and families,” says Dr. Fatemi. “That’s one of the main things that makes a difference.”

Megan Miceli

Worried about Megan’s failing health and determined to get their daughter the care she needed, the Micelis filed a request to the military for a compassionate relocation back to Baltimore so they could be near Kennedy Krieger. Drs. Fatemi and Hoon filled out stacks of paperwork about Megan’s condition as part of the application process. The request went up the military chain of command, and after weeks of waiting, Nick received orders to report back to Baltimore.

“When I got the final approval, I was excited… pumped, really,” says Nick. “Then we emailed Dr. Fatemi and Dr. Hoon and thanked them over and over for what they did for us.”

Picking Up Where They Left Off

Back at Kennedy Krieger, Megan was once again under the care of expert neurologists who knew how to treat her. Dr. Fatemi started her on new medications and supplements, and with the help of physical therapy, Megan slowly began progressing again. When she was reunited with her therapist Megha, Megan immediately smiled, grabbed her, and gave her the biggest hug. There was no doubt that Megan was relieved to be back.

Megan with Megha Patel

“You can see in Megan’s face how comfortable she feels at Kennedy Krieger,” says Patel. “She’s been coming here since she was 6 months old—she knows all the staff here. It’s really great to know that we can work together again to help her progress.”

Megan relearned how to pull up to a stand and walk with a walker, and in September, she took her first steps again during a physical therapy session— six steps, to be exact. “We were in total shock,” says Amie. “Just out of nowhere she took off!”

She began trying foods for the first time— ice cream is her current favorite— and most importantly, her major seizure episodes stopped.

The Micelis are thrilled with Megan’s progress and grateful to be back at Kennedy Krieger. “Her doctors and therapist are amazing— they are the best of the best!” says Amie. “Without them, I don’t know where we would be.”