Tiny Light Blake
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Blake
Meet Blake. Blake loves playing in the bath and enjoys playing with his cousins and extended family. He loves to dance to music. Blake is a ‘tough guy’ who has the amazing ability to smile through his tears. During his first day of life, Blake was diagnosed with Down Syndrome and AVSD (a hole in his heart). His parents were left wondering if they would lose their newborn son. Blake was flown to Children’s hospital that night and they stayed there for four days, and then they were transferred to their local hospital.
Related: What is Down syndrome
When Blake was only four months old, he endured open heart surgery to fix the AVSD, and it was at this time that he was also diagnosed with PAH, Pulmonary Arterial Hypertension. PAH is an incurable disease that affects the arteries that carry blood from the heart to the lungs. Although Blake is currently on medication to control it, the prognosis with PAH is a life-expectancy of 5-30 years. His parents pray for a cure everyday. There is now some hope with the science of stem cell research and lung transplants.
So far Blake has not shown any of the regular signs and symptoms of PAH, but his parents’ biggest fear is that Blake’s PAH will become more severe and eventually take him from them. Blake’s parents, Erik and Jenita, are unsure of what the future holds for Blake, but they live one day at a time, and consider each and every day with their son a gift. Erik and Jenita focus on all of the positive aspects. They try not to become discouraged with the things their son cannot do because they believe he will and can do anything he sets his mind to, even if it may take longer for him than it does his peers.
Beyond the diagnosis, this “tiny light” is full of life, and has an abundant amount of love to give. Blake’s parents have put their trust in God’s hands and believe that He has a bigger plan for their son.
Down Syndrome and PAH, Pulmonary Arterial Hypertension
For more information go to
www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-arterial-hypertension
Story by Pam Linfitt
Photos by Andrea Devisser Photography
Read More Stories From The Tiny Light Foundation
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This post originally appeared on our July/August 2011 Magazine
