Blog Archive

Sunday, December 08, 2013

Inspiring Stories from Students with Hemophilia


I just returned from India, there to check on our scholarship winners from Save One Life, my nonprofit. I was impressed to see such brave young men with hemophilia, most of whom do not often get treatment, attending college and trying to forge a future. They are succeeding. There's so much joy in watching a young person fulfill their educational dreams!

It's the same in the US, where so many with hemophilia are attempting to fulfill their dreams as well. Last week, I recognized the 17 winners of the Soozie Courter Hemophilia Scholarship, a Pfizer- sponsored tuition assistance program. This week I am pleased to spotlight the stories of three recipients who are working hard to achieve their dreams while living with hemophilia.

Evan Poole never let hemophilia B get in the way of his schoolwork or athletic pursuits. Evans condition forced him to challenge himself. When a bad bleed meant missing school, he always made sure to stay on top of his assignments. And he found athletic passions, such as golf, that he was able to pursue.

His perseverance has paid off. Following in his fathers footsteps, Evan is a freshman studying engineering at Trine University. He was also recently selected to take part in the National Hemophilia Foundation’s National Youth Leadership Institute (NYLI), based, in part, on his significant involvement in the hemophilia community. While Evan initially had some anxieties about starting school, including managing his condition without his parents, he is now excited and up for the challenge!

Travis Albright, a University of Michigan senior with hemophilia A, first became involved in the hemophilia community when he was 10 years old and attended Camp Bold Eagle in Muskegon, Michigan, run by the Hemophilia Foundation of Michigan (HFM). His commitment to the community steadily evolved year after year as he too became involved with the NYLI, as well as the HFMs MYLIFE youth leadership group. Through his leadership work, Travis quickly became a mentor to youth with hemophilia and encouraged peers to educate themselves about ways to successfully live with hemophilia.

Through his experiences, Travis became an advocate for people living with hemophilia. Following his passion to educate policymakers about hemophilia and advocate for access to treatment, Travis landed an internship in Washington, D.C., where he assisted Rep. Gary Peters and was invited to speak at NHF’s annual Washington Days event. He is now working to complete a major in public policy.

Michael O’Connor, a graduate student with hemophilia B, says he thinks of his life with hemophilia in two phases: before and after he started swimming. Swimming became both a passion and a way to help him get in tune with his body and better manage his condition. He swam competitively for many years and also started coaching. Michael was approached by a mother who had seen him speak about the importance of staying active and asked if he would give lessons to her 10 year old son with hemophilia. He jumped at the opportunity, and was able to combat the uncertainty of living with a bleeding disorder by being a role model for others. Michael believes that if you are smart about yourself and your body, you work hard, and you do what you love, its going to work out in the end

I second that from Michael. His mother, back in 1999, actually gave me the idea to start Save One Life, which now provides sponsorships to over 1,000 children with hemophilia in developing countries, and gives scholarships to many young men struggling to make it. It was hard work, but we love it, and we are reaping the rewards in watching young people live and thrive through their education. 

And things are working out for Michael. He is back in the water but in a different way. He is currently pursuing a Masters degree in geosciences at The University of Texas at Austin and taking part in a research project that often brings him to Louisiana. His work focuses on quantifying the role of coastal delta islands in filtering out nitrogen in the Mississippi River before it reaches the Gulf of Mexico and causes ecological damage.

While these students have taken different directions in their studies and extracurricular pursuits, they are all shining examples of overcoming challenges to achieve a goal.

We wish them much success in the future and thank them for sharing their stories. Visit Hemophilia Village and the site’s Facebook page for more information on the Soozie Courter Hemophilia Scholarship program and to see video clips about these recipients.

Great Book I Just Read
South African Dispatches by Donald Woods
Donald Woods rocketed to fame when his young daughter was burned from an acid-laced t-shirt sent by the South African police in the 1970s, where Woods was an outspoken white editor and critic of the brutal apartheid policy of the South African government that treated black people like subhumans. This collection of his best publications, short 500-800 word articles, makes him a South African Mark Twain. Scathing wit, brilliant commentary in the fewest possible words, brimming with carefully-veiled loathing, and as the articles build on over time, direct attacks to the government jugular. The wit and clever turn of phrases disappears when his friend, Steve Biko, the leader of the black nationalist movement, is killed while in police custody. This little gem of a book is incredible; my best literary find of the year. Watch "Cry Freedom," starring Denzel Washington as Biko, and Kevin Kline as Woods; great movie that captures the dark and brutal Afrikaners regime, and black struggle for self-rule. Five/five stars.

No comments :

 
Bayer