Bryce and his identical twin Lucca (holding hands above) were born two months premature in Philadelphia. Both weighed under 3 pounds. While Bryce was still in utero he was diagnosed with a congenital heart condition. After birth, he was quickly transferred to the Children’s Hospital of Philadelphia (CHOP). At one month old, he had heart surgery to help fix the issue. The surgery was successful, but something was still not right.
In a follow up one month later, Bryce was diagnosed with Pulmonary Hypertension and a very rare disease called Pulmonary Vein Stenosis (PVS). Pulmonary Hypertension is disease that cause high blood pressure in the arteries in the lungs. Pulmonary vein stenosis causes the veins in the lungs to narrow, obstructing blood flow between the heart and lungs. (Learn more about PVS at
http://www.pvsnetwork.org/) Ultimately, it can lead to heart failure. With an estimated frequency of 1.7 among 100,000 children less than 2 years of age, there is still so much to understand about this rare disease. It can present itself in different ways in terms of affecting one vein or multiple veins, but it unfortunately tends to be progressive. There is no known cure—intervention includes surgery or procedures to open the veins. Bryce has an extremely aggressive form of the disease and his one true hope is a lung transplant.
Bryce is such a warrior. During his 8.5 months NICU stay, he has battled through a heart surgery, countless medicines, and multiple procedures to keep his veins open. We were blessed to bring him home in January for a while he waited for lungs. While he required a lot of care, it was amazing to finally have all our family home and together. Unfortunately, a week later he was readmitted to the hospital and is currently in the CHOP Cardiac Center. We are working on bringing him home again.
This journey with Bryce has been scary and difficult, there have been times when we thought we were going to lose him, but he has always fought back and recovered. Despite a tough life, Bryce is a very sweet and loving boy. His smiles light up the room and everyone that cares for him. He is loved and prayed for by family and friends across the country. We are thankful for the generosity and compassion that many have shown us. We are especially grateful for the many CHOP teams that have been Bryce’s ally in this fight.
We are private people but ultimately we decided to tell Bryce’s story because we want to highlight the need for organ donation and especially pediatric organ donation.
Many people have asked us what they can do to help. Here is what you can do:
· Keep Bryce in your prayers and share his story
· Spread the word about the benefits of organ donation and specifically pediatric organ donation
· Learn about organ donation including pediatric organ donation at
https://organdonor.gov or
https://www.donatelife.net/ (
https://www.donatelife.net/ )
· Say yes to organ donation
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