BENEFITING: Lymphatic Education & Research Network (LE&RN)
Colette McDowell was born on May 17th, 2016. Two weeks before she was born, we learned Colette had fluid accumulating in her lungs, abdomen and skin. Lauren was admitted to the hospital so doctors could monitor Colette around the clock. Later, we learned that the cause of the fluid is a rare lung disease called pulmonary lymphangiectasia, basically a “leaky” lymph system in her lungs. Until recently, that diagnosis was considered to be near universally fatal. We were told that if we brought Colette home, the best we could hope for was long-term oxygen support.
After 114 days in the neonatal intensive care unit, including 38 days on a ventilator, Colette came home. She defied the odds and required no oxygen support of any kind. Other than a careful diet, use of an inhaler and regular medical appointments, Colette is thriving at home with her brothers. The doctors and nurses on our team refer to Colette as a miracle in the literal sense of the word. Nothing is promised, but we are blessed to be where we are and I know love and prayer had a lot to do with that.
Research into lymphatic diseases is chronically underfunded, especially rare cases like Colette. If you would like to help, I am working closely with the Lymphatic Education and Research Network on a variety on initiatives that could use your support. Lauren and I would be grateful for anything you can contribute!
About Lymphatic Disease and LE&RN
Up to 170 million people around the world suffer from lymphatic diseases and lymphedema. NIH estimates that those born with primary lymphatic diseases could be as high as 1 in 300 live births. However, not only is little still known about these diseases, there is a dearth of research on the horizon focused on new treatments and cures. Lymphatic diseases always dramatically affect quality of life, can severely compromise life expectancy and may also result in malformations. We cannot accept this. We need to fight for research that will bring new hope for those with these diseases.
Each year, the Lymphatic Education & Research Network (LE&RN) offers a limited number of travel awards to Ph.D. and postdoc students to defray registration and travel costs associated with attending lymphatic research conferences. Tomorrow’s research breakthroughs will only come if we attract the best and brightest into the lymphatic field.
The Lymphatic Education & Research Network is a 501(c)3 nonprofit established in 1998 to fight lymphedema and lymphatic disease through education, research and advocacy.