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I’m Aware That I’m Rare: Hollie Satona (230)
The phaware® interview
Pediatric pulmonary hypertension caregiver, Hollie Satona discusses her son Joelan’s PH diagnosis and the challenge of juggling caregiving because three of her four children are impacted by rare disease and special needs.
I’m Hollie Satona and I am the parent and caregiver of my son who is eight years old, Joelan, who has severe pulmonary hypertension.
It’s been kind of a whirlwind for JoJo since the day he was born. I didn’t know about pulmonary hypertension until about two years ago. I kind of wish I would have known some of the symptoms prior to diagnosis, because I think he could have been diagnosed sooner. He was born with a large VSD and ASD and those were both repaired when he was six months old. He seemed to be a normal kid after those repaired procedures, until he was six years old and decided he wanted to go to T-ball.
At T-ball practice, the first night, he couldn’t keep up. His heart was pounding. You could visibly see his murmur, visibly see it. So I’m like something is not right here. I thought…