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patient-storyRian was a healthy, thriving 18-month old toddler when a presumed ear infection left her unresponsive.  After several weeks in acute hospitals, she was diagnosed with Acute ecrotizing encephalopathy (ANE), a rare disease that caused swelling in her brain, leaving her unable to walk, or even lift her head.  When Rian and her family arrived at Spaulding in August of 2019, her mom, Margaret, knew Spaulding had a good reputation and she had a lot of trust. They loved being in such a beautiful setting on the water, but they knew it was going to be a long journey ahead.  On her first day of physical therapy, Victoria, her PT set the goal for Rian to move her hand and foot.  She was left unable to lift her head.  By the end of her stay, Rian was sitting, crawling, walking with assistance, and her favorite - crawling through a tunnel! As Rian’s recovery continued, she became a fixture on Spaulding’s pediatric floor, her mom calling Rian “the Mayor”.  Rian would smile and yell when she saw her favorite staff and therapists and had the support of everyone around her.  Her mom said the whole family felt the support of everyone around them.  Her advice to

After a rare diagnosis, toddler learns to walk again- Meet Rian

patient-story

Rian was a healthy, thriving 18-month old toddler when a presumed ear infection left her unresponsive.  After several weeks in victoria and rian in therapyacute hospitals, she was diagnosed with Acute ecrotizing encephalopathy (ANE), a rare disease that caused swelling in her brain, leaving her unable to walk, or even lift her head. 

When Rian and her family arrived at Spaulding in August of 2019, her mom, Margaret, knew Spaulding had a good reputation and she had a lot of trust. They loved being in such a beautiful setting on the water, but they knew it was going to be a long journey ahead. 

On her first day of physical therapy, Victoria, her PT set the goal for Rian to move her hand and foot.  She was left unable to lift her head.  By the end of her stay, Rian was sitting, crawling, walking with assistance, and her favorite - crawling through a tunnel!

rian in green tubeAs Rian’s recovery continued, she became a fixture on Spaulding’s pediatric floor, her mom calling Rian “the Mayor”.  Rian would smile and yell when she saw her favorite staff and therapists and had the support of everyone around her.  Her mom said the whole family felt the support of everyone around them.  Her advice to other parents going through a similar situation is to keep the faith, you are stronger than you think you are and kids are resilient.

Inspired by her daughter’s strength, Margaret is running the 2020 Boston Marathon for the Spaulding Race for Rehab team.  An avid runner, Margaret says, “Running has always been my therapy.  Every day during Rian's morning nap, I laced up my sneakers and ran along the Charlestown harbor and through the navy yard.  I took this time for myself to recharge. I had been reminded over and over that I needed to take care of myself in order to take care of someone else.  It wasn't until Spaulding, that I started to heed this advice.” Read more about Margaret’s reason for running and donate to the Race for Rehab today. 

As Margaret looks towards the future, her hope is that Rian continues to make a rian todaycomplete recovery – running, kicking balls, going to school and thriving.  She hopes that Rian, who loves playing doctor and nurse with her older sister, goes into the medical field one day. 

 

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