RYLAND’S STORY by TARA
Ryland and his family are from the Netherlands.
Ryland had his first episode a few days after his first birthday. He had a stomach virus and I thought it was like with any of my kids - I would just let it run its’ course. But this was different - he stopped crawling and started dragging himself across the floor. Then I noticed he couldn't sit up so we took him to the children's hospital in Atlanta.
At the hospital they ran tons of blood test, spinal taps etc. but they had no idea what was causing his rhabdomyolysis! After 8 days in the ICU we were released. We all thought it was just a freak thing that happened so we went on with our normal lives. He was great, healthy and growing strong.
Then a few days after his second birthday (almost exactly 1 year apart) he got strep throat with a fever. He didn't feel good but that’s normal with strep. Then I noticed he was limping, he wouldn't sit up, stand or walk and he was moaning and whining
We were transported by ambulance to the children's hospital again and sent to ICU. This time the genetic team came in and discovered he had the Lpin1 gene.
We spent a couple weeks in ICU he was released in April and is doing great now! He is growing into an amazing toddler.
Tara Fowler, Ryland's Mum.