Named Grant Donors
The White Family
Steve White and his family are among PHA’s most PHenomenal contributors. Their generous donations to establish the Christen White Cranford Pediatric PH Research and Mentoring Grants help propel us forward in the fight against pulmonary hypertension. Read Steve’s story as he remembers and celebrates the life of his daughter Christen and learn how named research grants can make a difference in the lives of those affected by PH.
Christen was adopted as an infant while her mother and I were living in Tampa, Fla. The first time I held her on the day she was born, I sensed a combination of sweetness and feistiness – both of which became more apparent as she grew. When she was a small child, people would ask her where her blonde hair came from — her mother and I had dark hair — and she would cheerfully answer, “From the angels.” Christen loved her family and, perhaps because she knew she was adopted, always had a very flexible and expansive idea of what family means; if you got close to Christen, you became family.
She loved children, dogs, country music, singing in the choir, Italian food and holidays, which she insisted be observed meticulously with all the traditional trappings. And she always cried at the end of a movie, no matter what it was about or whether she had seen it before. She had a million dollar smile that would light up a room. She was funny, kind-hearted, smart, stubborn, sweet, and occasionally irreverent and quite outrageous. When she was 15 one frigid winter day in New York City, she gave away her favorite coat to a shivering homeless woman who had none. There was no one like her, and we are aware of how much we miss her every single day.
We believe Christen was symptomatic for at least two years before she fainted while at college. Her primary care doctor told her to lose weight and didn’t seem too concerned about her fatigue and shortness of breath. When Christen was diagnosed in September 2000, it was very difficult to find information on where the best doctors for PH were. We were told any academic medical center would have someone who could help, but that advice cost us a valuable nine months of time before we finally ended up at Vanderbilt Medical Center where she began to receive excellent care. But by then, her PH was very advanced.
Christen found PHA on the Internet about six or seven months after she was diagnosed. It was through the PHA website that she learned about the 2002 International PH Conference in Irvine, Calif., for which she received a scholarship to attend. I met up with her at Conference, and we attended many sessions together. It was the first time she met other patients, and the information she learned there gave her a great deal of hope and a resolve to keep fighting.
I think it would make Christen smile to know a research grant named for her might help children in the future. Nothing would please her more. And naming a grant for her is a way for my wife Andrea, Christen’s brother Aidan, and me to keep Christen’s memory alive and to share her memory with others, including the scientists who will receive support from this fund.
When I was first asked to join PHA’s Board of Trustees, I resisted the invitation because I felt that the constant exposure to the whole issue of PH would only make coping with the loss of my daughter even more difficult than it already was. When I consented to join the Board, I said that I would never attend a Conference or accept any leadership position. I laugh about that now because a few months later, I was at Conference and I’ve since had a number of leadership positions, including Chair of the Board. Being a part of PHA has given me a way to redeem Christen’s death by turning a tragedy into positive action. I never want another family to endure what we went through, and if Andrea, Aidan and I can play some small part in moving toward that goal, then we’ll be happy. And on top of that, I’ve made some of the best friends I’ve ever had in the PHA community.
I often think, “What if there had been PH Care Centers in 2000? Or what if there had been an early diagnosis campaign in the late 1990s that Christen’s primary care physician heard about? Or what if there were 13 FDA-approved treatments then instead of just one? Maybe Christen would be alive today, and maybe I would have grandchildren.” So, for other kids and dads and moms, I’m fully committed to fighting this wicked disease any way I can, and so are Andrea and Aidan.
In spite of the loss of my daughter, our lives have been full of many blessings. Andrea, Aidan, and I are healthy and happy and grateful for all those blessings. We have discovered that by giving as generously as we can, we actually receive even more blessings. A further benefit comes from the knowledge that we might be sharing our blessings with others whom we have never met. We actually derive pleasure and satisfaction from giving. We feel great about that and hope others will join with us.
For more information about making a named research grant, contact Giving@PHAssociation.org.