30 Days of PH: A Devastating Diagnosis Will Become Riley’s Blessings

30 Days of PH: A Devastating Diagnosis Will Become Riley’s Blessings
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Day 23 of 30 Days of PH⁣
Topic: A Devastating Diagnosis Will Become Riley’s Blessings

This is Kelly’s Story @kellylt00

Our daughter Riley is 10 years old and was diagnosed with Pulmonary Hypertension in 2014, just 4 months after her 4th birthday. It was quite a devastating diagnosis for our family. Her biggest symptom was shortness of breath with activity. That year Riley was immediately sent to Cincinnati Children’s Hospital over the Christmas holiday for a heart catheterization and to decide on a treatment plan. She started oral medications after finding out her PH was severe. Three months later her PH worsened, and she was started on subcutaneous medication.

During her Christmas hospitalization and throughout many other stays, Riley was treated so wonderfully by her Child Life team. She was given toys and activities to keep her busy and help take her mind off of being a sick kid. This really made a big impact on her. 

Over the years, she also met and has kept up with other PH kids. We talk about it when other kids are sick or in the hospital. Riley has a big spot in her heart for her PHriends and has dreams of starting her own non-profit someday. She wants to help other PH kids and their families when they are hospitalized. All of this has stemmed from her experiences and following her PHriends’ stories over the years. She hopes to provide happy mail to the kids and help the parents by providing gift cards for meals and gas. She has raised money for birthdays and Christmases for this very reason! Her non-profit will be called Riley’s Blessings! 

PH has been so devastating to our family with many ups and downs, but it has also given our daughter an amazing perspective at such a young age. We are thankful for her servant’s heart! 

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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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