Haemophilia Society

Oldest Hemophilia Humanitarian in World?

Bill Boughton

I
flew to England this past week—for 48 hours only! Left on a Wednesday night,
returned on a Friday night. A British customs agent asked me why I was staying so short
a time—“All this way?” she asked, eyebrow raised. “Yes, to visit a
dear friend,” I replied. (And also, I have stuff to do on the weekend here in
Boston.) “Besides, it’s faster than flying to California,” I noted. “True,” she replied.
Where does she live?
Not
she, he. “He” is a 91-year-old gentleman named Bill Boughton, and truly one of
my favorite people in the world. There are not many people I’d fly 6 hours each
way, and three hours worth of train, tube and express train each way to see—not
to mention that nice hefty several hundred dollar “tax” (Thanks, British
Airways) above and beyond my frequent flyer miles.
Bill
could very well be the oldest hemophilia humanitarian in the world. At an age
when most people are immobile, or aching, or lamenting, Bill has not lost his
joy of living, his quick wit, his desire to help the less fortunate. He is in short, a marvel.
He is blessed with good health, excellent joints, but also a resilient and
grateful attitude; he appreciates everything he has. And he wants to help
others.
Bill’s daughter Emma and the goats!
How
did this charming and witty elder statesman get involved with hemophilia?
There’s a tie to Romania. He and his wife in the 1980s wanted to adopt a Romanian
orphan, a victim of Romanian dictator Nicolae Ceaușescu, a brutal,
heartless politician who enforced multiple births in Romanian women, by denying
birth control and insisting they stay pregnant. As a result, thousands of
babies were abandoned; many contracted AIDS. During his visit to Romania, Bill happened upon a boy
with hemophilia—I hear this kind of story often!—was impressed by the child’s
needs and fortitude, and wanted to help. Coming home to Somerset, England, he
phoned the chair of the Haemophilia Society, in London. They directed him to me.
So
in the early 2000s, I received a surprise call from an articulate man with a
British accent: “Hallo!” he started. And an eternal friendship was formed. He
wanted to source factor, and heard that I donated some. Eventually we were able
to get this boy some factor, and Bill and I conspired together from time to
time to help some Romanian children with hemophilia.
Laurie Kelley and the kid
I
loved chatting with him, first, because he impressed me with his concern for
others, especially at his age. Second, the man was downright funny! Witty.
There’s nothing like British humor, unless it’s Irish humor (oh, that comment
would set him off). The fact that I lived in Boston, home of the Boston Tea
Party, where we dumped the King’s tea in the harbor and set off the Revolutionary
War, was a source of many jokes between us. He called me a “Yankee” and I
called him a “Limey.” Or “Irish Witch” to my “Prince William.” Sometimes he
would just call to chat: “I was out on me walk today, love, when I came upon a cow
stuck in a ditch. Well, I scrambled down the ditch to help her out!” At his age! He still, at age 91, takes a
daily morning walk with his Border Collies Molly and Harry.
When
the opportunity came to hold Romania’s first World Hemophilia Day in 2005, my company
paid the expenses. And I invited Bill to come and be a guest. It was our first
meeting. Seeing him across the hotel lobby, I flashed a huge smile and we
hugged; I felt like I had always known Bill. He sat at the head table with the
other dignitaries, and spoke about his efforts to help those with hemophilia in
Romania.
Thistle and Martin
That
year we also had our first hemophilia summer camp, courtesy of Adriana
Henderson, who founded S.T.A.R. Children Relief, to help children in Romania. Adriana,
a Princess Diana look-alike, is a tour de force in making things happen in
Romania for children with hemophilia. She and I had collaborated together, and
indeed it was she who put together the entire World Hemophilia Day, single-handedly!
She invited me and Bill to attend camp. I marveled at first how Adriana pulled
everything together, seemingly so effortlessly and perfectly. And second, at
Bill—80 something years old and yet he donned a bathing suit and went right
into the Black Sea with the boys, playing, teaching them to swim. They loved
him. He had taught himself Romanian! He was able to speak with them.
Each night at camp we sat in the dinner hall with a glass of wine and got to know each other better.
Laurie and Bill at the Air Museum, Yeovil, England
And
when they had the talent show, he insisted that we sing “God Save the Queen.”
Well, that was “bloody” hard to do as an American (from Boston, no less!) but
we had fun. The boys loved all the joshing around.
Not
returning to the annual camp after that, I would have a hard time meeting up with Bill. So
I vowed to fly to England annually to visit. I’ve tried to keep that
promise, even if it is only for a day or so. I attended his lovely 90th
birthday party 18 months ago, at the Lamb and Lark pub in Yeovil, where I got to
meet his neighbors, friends and family. His daughter Emma lives with him, and
she and I have become great friends.
Grumman Martlet

On
this visit last week, I flew to London, arrived at 6:30 am (1:30 am EST) hopped the
Express to Paddington Station, took the Bakerloo “tube” to Waterloo Station, then
the Southwest train to Yeovil Junction, a two hour ride across the lush, green
carpeted countryside, checkered with fluffy sheep. Bill and Emma were at the
station to pick me up. It’s like no time had ever passed. We went straight to
his home, and in the orchard out back, were “Thistle” and “Martin,” two
adorable, wobbly-kneed kids, born just two days before. They’re an addition to
the ten chickens, two dogs, four cats and four other goats. We had a marvelous
visit, enjoying English tea, and immediately visiting the Air Museum nearby.

Three generations of flight

What
timing: the Air Museum is filled with vintage World War I and II planes,
including a Phantom jet, a Vampire jet and a Sopwith Camel (remember Peanuts’ Snoopy?). Bill
served in World War II, and of course, World War II’s anniversary was just two days before, September 1, 1939, when Hitler invaded Poland. Bill was in the
Signal Corps, and traveled the world as a young enlisted man. This visit gave him the
chance to share his war stories, and facts about WWII. We marveled at the
exhibits, but I marveled at how deftly Bill walked up the many, many stairs,
including the steep ones to go inside a full fledged, life-size Concorde!

I
think Bill must be the world’s oldest hemophilia humanitarian, and is easily
one of the most interesting people I know. He is easy to visit and be with:
witty, gregarious, fun-loving, kind, generous. One of my favorite people ever.
Laurie in front of a “Vampire”

Indeed,
I was so interested in his life, I asked him once to put it down on paper.
Turns out Bill is quite the writer too! I loved his story so much I published
it. I made 20 books for him to share with family and friends. He called it, “My
Life in the Royal Air Force.” It ends with the end of WWII.
Good byes at Yeovil Junction

I
think it’s time for him to write about his life post war, including what drew
him to work in hemophilia and make a difference in the life of so many
children. There aren’t enough Bills in the world; indeed, there couldn’t be.
When God made Bill Boughton, he broke the mold. There is only one, but I hope
to be like him when I am in my later years: able to travel, able to give, and
able to make a difference.























Great
Book I Just Read
Night
 [Kindle]
by
Elie Weisel
Considered
a classic now, Night is the true story of Nobel
laureate Elie Wiesel years as a Jewish teen who watches the horrors of
genocide unfold slowly in his community. He
documents it day by day, step by painful step, the depredation, starvation,
beatings, and separations. His mother and sister gone in one moment, his
struggle to keep his father and he together in a death camp, through almost any
means possible. Once a pious Jewish boy, he confronts God in his heart and
cries out: how can such horrors exist? Where is the God he once worshipped? This
easy-to-read book is deceptive as it packs a powerful spiritual punch. Perfect
reading for the week of WWII’s anniversary. Five out of five stars.

Inhibitor Meeting in UK


Grifols, a Spanish based company that manufacturers Alphanate and Alphanine, held a one day educational conference on inhibitors for nurses in London yesterday. I was pleased to start the day with a talk on inhibitors in America: how the main struggle is finding a way to afford the treatment that is already available, given mounting pressure from payers and limited lifetime caps. Professor Alessandro Gringeri, of the University of Milan, gave an excellent comparison of ITT protocols around the world. He reminded us that ITT has been with us for 31 years, but since the first attempts, different protocols have developed. He reviewed the specifics of the Bonn, Malmo and Van Creveld Klinick protocols, and how responses to different ITT are either patient related or treatment related. ITT does not work with all patients, particularly those with mild hemophilia.

Dr. Sylvia von Mackensen is a psychologist at the University Hospital Hamburg-Eppendorf, Hamburg, and gave a presentation on Quality of Life Studies: measurements, outcomes and expectations. This is an important subject for inhibitor patients, who suffer a great loss of QoL when by passing agents or ITT are not always effective.

My colleague Becky Berkowitz, RN from the HTC in Las Vegas, Nevada, spoke about nursing in the US. Becky has a unique position working in an enormous state with a small population, and a lean HTC staff: her efforts to visit the native Americans and advocate for their treatment held the audience’s rapt attention.

The rest of the afternoon held presentations by Dr. Mauricio Alvarez-Reyes of Grifols, nurse Allyson Hague of Manchester Children’s Hospital, nurse Kate Khair of Great Ormond Street Hospital and Vicky Vidler, nurse consultant of Sheffield Children’s Hospital. It was a wonderful event, full of information and diverse speakers.

After the program, I took a tour of Great Ormond Street Hospital with Kate Khair, Virginia Kraus (Grifols), Becky Berkowitz, and Mark McDonnell, UK Manager (Grifols). It’s a major HTC, with over 450 pediatric patients, with a beautiful ward. I had always heard of this famous hospital and it was a pleasure to see it from inside.

This has been productive week: I was also able to visit on Tuesday the Haemophilia Society, which I believe was the first hemophilia society in the world. Chris James is the relatively new executive director, and he graciously allotted me 3 hours to tell me about their programs and population. We also spoke about sharing my company’s free resources with his members. They have excellent programs and in many ways are one step ahead of many other organizations in terms of programs for inhibitor patients.

Last of all, I saw on Monday an historic site: the Broad Street Pump, the epicenter of the devastating 1854 cholera epidemic of London. This important landmark represents the beginning of modern public health. It was here that a contaminated well led to hundreds dying within one week, and caused English physician Dr. John Snow to buck conventional medical thinking, which thought it was miasma–bad air– that caused the outbreak (this was before germ theory). By using a scientific method and putting himself at great risk, Snow interviewed an entire neighborhood, noting where deaths occurred: the outcome was a map which revolved around the pump and well. After a struggle to convince authorities that water was responsible, Snow had the handle removed. The epidemic was over and a new theory on germs was born. This one pump represents all modern day efforts to provide clean drinking water to overcrowded cities worldwide. It was simply amazing to actually see the pump, and be grateful for the dedicated efforts of this remarkable British physician. (Read The Ghost Map for an excellent recounting of this story)

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