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With help from Shriners, family travels to Philly for arthrogryposis care

Spunky 2 year old receives amazingcare in hopes of walking

With help from Shriners, family travels to Philly for arthrogryposis care

It takes Anastasia and her Nana, Angey, a bus, a train, a plane and a taxi service to arrive at Shriners Hospitals for Children — Philadelphia from Ann Arbor, Michigan. And they wouldn’t have it any other way.

Anastasia, known as Ana, was diagnosed with arthrogryposis multiplex congenita (AMC) when her mother was at just 18 weeks’ gestation. Her joints were contracted in both her arms and legs, making it impossible for her to walk or bend her arms.

“It was a huge advantage learning so early,” said Angey. “I’ve spoken to mothers who found out at birth and it just seems so hectic. It’s a lot all at once. I had time to research everything. By the time Ana was born, I knew exactly what we were up against. I knew what we were going to do and who we were going to see.”

Ana was going to see Harold van Bosse, M.D., at Shriners Hospitals for Children — Philadelphia.

“I found arthrogryposis support groups on Facebook and quickly learned that this was the place to be,” said Angey. Ana receives care from both Dr. van Bosse, who specializes in AMC, and Dan Zlotolow, M.D., who specializes in upper extremities.

“There’s a huge spectrum of presentations [of AMC], from mildly involved, where the contractures don’t get in the way much, to severely involved, where the arms and hands are nearly useless and the legs can’t be positioned for walking,” said Dr. van Bosse. “In many cases, these findings can be improved with therapies, bracing and surgery.”

Ana was only a year old when she had her first surgery on her right arm. After a round of casting her club feet, Ana, now almost two, returned to the Philadelphia Shriners Hospital last month for surgery with Dr. van Bosse and Dr. Zlotolow that included a heel cord release, a hip flexor release and an elbow release.

Though recovery can often be the biggest hurdle to overcome, our medical staff was impressed with Ana’s ability to bounce back and take it all in stride.

“The care has been amazing,” said Angey. “There’s nothing else like it. Dr. van Bosse and Dr. Zlotolow really know what they’re doing and there are only a handful of doctors in the world who know what they’re doing dealing with arthrogryposis.”

“Families will assume that Philadelphia is too far away and just settle for what’s local. I encourage them to ask questions and find out what resources are available to them. There’s usually help available,” said Angey.

Help came for Ana from Moslem Shriners in Detroit. They help Angey afford travel expenses to and from Philadelphia in addition to food and lodging expenses. To show their appreciation for the Shriners' generosity, Angey and Ana posted a video to Ana’s YouTube channel of Ana thanking her friends.

Though Ana may require many hospital visits, unlike the average toddler, her grandmother has no complaints. “She is so good. She’s amazingly easy. She’s a good sleeper. She’s well-adjusted. She doesn’t get fussy. She’s very observant and intuitive. It’s been fun raising her,” said Angey.

As Ana’s caregiver during the day, Ana’s uncle, Austin, was quick to chime in. “She’s a handful,” said Austin, citing Ana’s aptitude for mobility – she’s able to scoot around their home, playing with toys and their family cat. Like any other toddler, Ana loves playing with Legos, her doll house and puzzles. Her constant companion is a plush giraffe, featuring leg casts (that used to be Ana’s own wrist braces) just like her own.

Moving forward, Angey is hoping that Ana will be able to walk independently and feed herself. In the long term, her Nana hopes independent dressing and toileting are manageable.

“Overall, I think Anastasia’s future is really bright,” said Dr. van Bosse. “She’s undoubtedly a smart girl, and will learn to adapt to her limitations, and with our help, develop to her full potential.” Ana will most likely need additional procedures and bracing as she grows, but Dr. van Bosse believes she has great potential for walking.

Just as Ana will experience physical challenges, Angey is equally aware of the emotional and mental challenges that can come with Ana’s condition. “I really want her to be comfortable and confident in herself. I want to ingrain in her now that she’s amazing!”

Anastasia - happy girl

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