Donate to CaringBridge in the next 2 days, 6 hours, 47 minutes and 15 seconds
and your donation will be matched, dollar for dollar, up to $10,000, thanks to a matching gift from Living Water Foundation.
Julia’s Story
Site created on April 9, 2019
Julia was born on Nov. 15th, 2001 with a valve in her heart that never opened. She had one open heart surgery at one day old and a second surgery at 6 months old. These surgeries have mostly repaired her heart defects.
Julia has also lost the use of her left lung because of an extremely rare lung disease. She completed a year of chemotherapy in September of 2003 to keep the disease from taking her right lung as well. Her left lung is still there but the crucial connections are closed. The disease is not cancer but behaves similarly and that is why they are using chemotherapy to treat it. Fewer than 30 children have ever been treated for this lung disease.
Julia's heart disease is Pulmonary Atresia. Her lung disease is Acquired Progressive Pulmonary Vein Stenosis.
In June of 2019 Julia had an artificial heart valve placed through an open heart surgery. This was in part to prevent degeneration of the heart muscle. Julia recovered well from that surgery and was able to play her full Varsity Field Hockey season that fall.
In 2019 Julia was offered an experimental heart valve. The surgeon and research team had hoped that this new valve would last longer that the other valves being offered at the time. In June of 2023 the research team contacted us to let us know that some other people with the same valve were having issues. In October of 2023 it was decided that after CT results and the issues that others were having that Julia's experimental valve should be replaced. That surgery is now scheduled for November 30th, 2023.
Julia is currently finishing up her course work for her degree in Health Sciences from Springfield College.
Please join us in sending prayers and healing energy to Julia as she prepares to get a new heart valve.
Happy New Year! Julia had her first check up today with Cardiology and she is continuing to heal well! We are grateful for all of the support, healing and prayers for Julia!
