Aug. 26, 2015
TOPIC: Patient Stories
Posted by Jennifer Huron
“I really appreciate all that NORD does for those living and managing their lives with rare disorders.” -Paula Mann
Paula Mann is a mother of a boy, Garrett, born in 2008 with Mitochondrial Disease, a rare disease that can be present at birth or come on later in life. He passed away in 2012. “This was my and my husband’s first introduction to rare diseases,” says Paula. “In advocating for him and traveling many distances to seek expert medical treatment and possible clinical trials, the disease proved greater and eventually took his life six weeks prior to his fourth birthday.”
“It was through Garrett that we were introduced to other children and families fighting rare diseases and realized there is not enough dedication to this area of medicine,” she added.
Since Garrett’s passing, Paula and her husband have continued to fight for those who may not know how. She met with her local congressperson to advocate for more funding for research to find treatments and cures, and she met with Chuck Mohan, Jr., President and CEO of the United Mitochondrial Disease Foundation, to identify areas of need.
They also teamed up with Make-A-Wish Foundation to create a scholarship in Garrett’s memory, and volunteer at Give Kids the World, where children with life-threatening illnesses can escape the hardships of hospitals and treatments for a week and enjoy all that they can while visiting Disney and other area theme parks.
Through her efforts to help others, Paula has caught the attention of many people, including her employer, Novartis Oncology. Novartis Oncology awarded Paula the Mike Lellyo Award, an internal award given to those who commit their lives to helping advocate for others. Created in honor of Mike Lellyo, who encompassed a life of selflessness through volunteering and advocating for others and who passed away suddenly, the award is designed to recognize individual effort and dedication in putting the patient’s interest and welfare first.
“One aspect of winning the Mike Lellyo Award is to choose a charitable organization where Novartis can make a donation,” said Paula. “I have wholeheartedly chosen the National Organization for Rare Disorders for many reasons. Most importantly, I know the emotional, physical and financial strain that patients and loved ones can experience while living with these rare conditions. I believe in your mission and am honored to make this donation on behalf of our son.”
Garrett was given the challenge of living his life fully, while fighting a rare disease. Paula’s hard work and dedication continues the fight for Garrett and others affected by Mitochondrial Disease. We are grateful to Paula for her donation to NORD, which helps us continue to fight for Mitochondrial Disease and the other 7,000+ rare diseases.