Meet Harper one of our Inspiring ROHHAD Warriors, this blog was written by her mum Chelsey to help raise awareness for Rare Disease Day 2019 this is Harpers #RareReality
“Harper Pursley is 6 years old and lives in Rathdrum, Idaho. Shortly after her 4th birthday we started noticing changes in her. She gained about 25 pounds in 4 months, she was exhausted all the time, and she presented with severe social anxiety. We contacted her primary care provider, and unlike most of our other ROHHAD kids, he listened to me and didn’t play off her symptoms as a “growth spurt” or us over feeding her.
We started testing for everything our doctor could think of…blood draws, MRIs, echocardiogram, ultrasound, xrays, and what finally gave us our first real glimpse at our diagnosis was a sleep study. Her study showed Harper’s O2 levels dropping into the 50s. That’s when Harper’s doctor first told us he thought it may be ROHHAD.
The next day we were sent home with an oxygen concentrator and instructed to use it whenever Harper slept. Two days after that, I walked in her room to Harper making almost a choking noise. She was unresponsive and it took us 15 minutes to get her to open her eyes. We were then transported to our local ER where the pediatric specialist on call made the decision to life flight Harper to Seattle Children’s hospital to get our formal diagnosis and initiate her Bipap.
As crazy as those next days were, there wasn’t a better place for us to be. We were set up with a pulmonologist and an endocrinologist who we absolutely love. Harper was initiated on bipap without issue, though her settings are quite high. Our plan was travel to Seattle everything 3 months for sleep study appointments with our specialists, and multiple tests to check for any abnormalities.
Everything was going somewhat smoothly, only small hiccups here and there, but her sodium was always an issues. In May of 2018 Harper became lethargic at daycare and could not walk properly. I immediately took her to our local ER where we found she had a massive drop in sodium. From there we transported to the local children’s hospital where she had multiple grand mal seizures before she was sedated then intubated. After this stay, thankfully we have not had a drop again…but unfortunately with ROHHAD it is only a matter of time.
Our struggle is not just when we have big issues that cause hospital stays. Our struggle is EVERY DAY. Every day I wonder if this is it. Because honestly it could be. Our kids lives are cut short with no prior warning. If we hadn’t been at a hospital when Harper started seizing she could be gone right now. My daughter was only saved because we were at the right place at the right time. Next time I may not be so lucky.
Our kids do not deserve this. These parents hurt. We hide and silently cry so our kids don’t have to see us. We are strong so our kids believe in themselves, so they can be strong. Our children need help. These families need help and support. We need a cure for this terrible disease. Please help us Find A Cure.”