30 Days of PH: A Pediatric PHighter And Fundraising “Fore” A Cure

30 Days of PH: A Pediatric PHighter And Fundraising “Fore” A Cure
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Day 18 of 30 Days of PH⁣
Topic: A Pediatric PHighter And Fundraising “Fore” A Cure

This is Jayna’s story @jaynaw67  

On August 21, 2012, our world was forever changed when our 14-month-old son, Jackson, was diagnosed with pulmonary arterial hypertension. A few weeks earlier, a pediatrician had heard a heart murmur and referred us for an echo. Jackson’s echo showed pressures of 145 mm Hg and we were told that our baby boy would possibly need a lung transplant. Two days later, a heart catheterization confirmed the diagnosis, and we were then told that he would probably need a heart and lung transplant. We were devastated, but we made the decision to PHight. We weren’t just going to give up on our baby boy.

Jackson was started on two different oral medications to try to dilate the arteries in his lungs. We saw improvements in his heart function, but his pressure in his heart remained very high. In January 2013, after getting a 2nd opinion from a pediatric PH specialist at Boston Children’s Hospital, we decided to put Jackson on the strongest medication available for PH, Remodulin. Our new normal included multiple medications a day (even overnight), a toddler being attached to a pump 24/7, pump changes, monthly echoes, and insurance fights. Once we had somewhat adjusted to our new normal, we set our sights on PHighting to help find a cure.

In October 2013, we hosted our first annual Driving “Fore” a Cure for PH golf tournament. Since 2013, we have hosted 7 tournaments and raised over $250,000 for research. In 2019, Jason Boehme, M.D., was awarded the PHA Robyn J. Barst, M.D. Pediatric PH Research & Mentoring Grant in honor of Jackson, to study metabolic abnormalities in congenital heart disease and how it relates to PAH. Other researchers supported by PHA are looking for new methods for early detection, new treatments, and ultimately a cure.

Jackson is now 9 years old and we thank God that he is considered stable today. Despite all that he has been through, Jackson is a sweet, fun-loving, inspirational little boy. He calls himself the PH Warrior, and he certainly has a warrior’s heart. He inspires us every day to keep PHighting.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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One comment

  1. Jen Cueva says:

    Thanks for sharing Jackson’s story. He is a true warrior, I would agree. Having parents to advocate and care for him when he could not is a blessing.

    Take care of yourself, too, Jayna.

    Gentle hugs,
    Jen

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