Justin’s Story

Fifteen-year-old Justin Ith from Revere, MA was an avid skateboarder, loved video games and was a talented and self-taught guitar player. In school, he exceled in math and after learning about computer programming from his dad, taught himself how to program and code. Like many teens his age, Justin was excited about his future and the lifetime of opportunities ahead of him.

“My joints were so swollen that I couldn’t move without being in horrible pain,”

Without any warning, in December 2013, the activities that Justin enjoyed so much suddenly became exceedingly difficult and painful. Skateboarding was impossible as was playing the guitar. “My joints were so swollen that I couldn’t move without being in horrible pain,” said Justin. After days of ongoing and increasing discomfort, Justin’s dad took him to the hospital where doctors diagnosed his condition as Juvenile Rheumatoid Arthritis, an autoimmune disease that causes chronic inflammation of the joints. Upset but not defeated, Justin went home feeling mostly relieved that his medical condition could be managed by following the doctor’s instructions and with medication to help his joint pain and discomfort.

It was the day of his sixteenth birthday and just three months after receiving his diagnosis that Justin’s health took another unexpected turn for the worse. Feeling suddenly overcome with exhaustion, Justin quietly slipped out of his own birthday party to take a quick nap. With every intention of re-joining his friends at his own party, he proved just too tired to return. When he awoke the next morning, Justin was doubled over with stomach pain and after struggling to make it out of his room; he collapsed, unable to move. With barely enough energy to yell for help, Justin managed to get the attention of his aunt who came running to his rescue. Minutes later, he was on his way to the hospital…again.

While in the hospital, Justin’s health worsened. He developed profound muscle weakness and could no longer move or breathe on his own, requiring ventilator support around-the-clock. After thorough testing and various treatments, doctors at Boston Children’s diagnosed Justin with Lupus and AMAN Syndrome (Acute Motor Axonal Neuropathy), an extremely rare form of Guillain-Barré syndrome that causes paralysis and loss of reflexes.

After several setbacks and two months in the Intensive Care Unit, Justin finally stabilized enough to be transferred to Franciscan Children’s to begin rehabilitation. When he arrived, he was unable to talk, breathe on his own, required a feeding tube, could not move and had lost all hope. “I thought I was going to die,” remembers Justin. “I thought I was going to disappear and be gone forever.”

Justin worked with a comprehensive care team of doctors, nurses, and therapists during his stay at Franciscan.

A comprehensive team of doctors, nurses, and therapists quickly set to work to develop an individualized therapy program to facilitate Justin’s improvement and rehabilitation and after nine months of hard work, determination and intensive therapy, Justin walked out of Franciscan on the day of his discharge.  “I can’t really express the amount of joy I have or how happy I am, how far I made it,” said Justin on the day he was released from Franciscan.

“I want to go to school to be a child life specialist so I can carry on the inspiration they passed on to me.”

Justin fought a long and hard battle and with the help of his dedicated Franciscan Children’s team, Justin conquered all. He is back to playing video games and the guitar and has hopes to get back on a skateboard soon. As for his future, Justin has high hopes to attend college. “I want to go to school to be a child life specialist so I can carry on the inspiration they passed on to me. They have the heart to take care of sick kids and they give us hope, they give everyone hope,” Justin said.

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