Temi and Lance Jones welcomed a beautiful baby boy named Jaxon into their lives in July of 2016. He was healthy, and they never had any cause for concern until the pediatrician heard a heart murmur during Jaxon’s 4 month check-up. Jaxon was referred to a cardiologist, and ultimately diagnosed with pulmonary hypertension. Since this video was filmed, one PH drug has been approved for pediatric use. Prior to the announcement, there were 14 FDA-approved PH treatments for adults living with the disease. Jaxon’s parents shared with PHA that their son is in the care of Dr. Eric Austin and nurse practitioner Anna Brown at Monroe Carell Jr Children’s Hospital at Vanderbilt, a PHA PHCC-accredited pediatric PH center.
Jaxon is the highlight of our day, every day. Despite everything he’s up against, he wakes up smiling and laughing every morning. He is such a happy child who has an amazing personality and curiosity for the world. It’s impossible to quantify how much joy Jaxon brings us each day.
His beautiful dark eyes, his long curly hair, his adorable smile and contagious giggles leave us loving him more and more each day. Jaxon loves being outside, looking at cars and dogs, watching his favorite movies (Baby Boss and Toy Story 3) and being tossed and swung in the air. His absolute favorite activity, however, is reading books! After we returned home from the hospital, we made a habit of reading to him each night before bedtime, sometimes even 5 or 6 books before he got sleepy! Now, Jaxon loves to pull all of his books off the shelf and flip through the pages as fast as he can. Some of his favorites are the Little Engine that Could, A Fish Out of Water, Green Eggs and Ham, but he especially loves pop-up books!
To see Jaxon reading books on his own and attempting to mouth out his favorite parts is such a joyful and proud moment for us as parents. We are amazed, despite everything he’s gone through, at how smart Jaxon is and how well he is developing. It’s surreal to see him now beginning to walk on his own and climb up stairs!
Jaxon is everything to us. We love him so much, and to see him happy and laughing every day, makes everything else insignificant.
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This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.