When Save One Life executive director Martha Hopewell and I arrived at
midnight after traveling three flights in 30 hours, we sailed through customs in Phnom Penh, capital of Cambodia, even though I am carrying factor to donate; it’s always a good day when all our bags show up. Sithan, a 33 year old with hemophilia A, and president of the Cambodian Hemophilia Association (CHA) and his wife were waiting to greet us, with jasmine wreaths.
Next day, Wednesday, at 4 pm, Sithan and his wife arrived at our boutique hotel, which sits on the Mekong River. We sat in the lovely restaurant while Martha reviewed all the Save One Life material with him. I took some photos, and then we all had dinner. The food here is
great! We plan our week which will include visits to the hospitals, families, and The Killing Fields.
Cambodia is a country that has suffered. Primarily Buddhist, and peaceful, it has nonetheless endured some of the worst horrors mankind has to offer. Bombed incessantly from 1970-73 by the US, in an attempt to destroy the Ho Chi Minh trail which supplied Communist North Vietnam, then torn apart by its own leaders as the evil Pol Pot regime took over from 1975-1979. About 3 million people died from starvation, executions and torture as Pol Pot attempted to create a self-sufficient, Communist utopia. Instead, it was hell on earth. That era wiped out a generation, and in speaking with families this week, we would witness how family histories just disappeared.
And it still suffers, from untreated hemophilia. Our goal will be to assess Cambodia for Save One Life, and then enroll our very first children, offering hope to some families in poverty here.
Laurie with random kids in front of Royal Palace
Thursday October 2, 2014
Sithan with Dr. Sophal
Today we went to the pediatric hospital to visit Dr. Sophal Chean, the chief hematologist. It’s a small hospital and our visit was short but productive. The day was bright and hot, and slightly humid. Sithan and the treasurer of CHA, Chanthearithy (“Rithy”) Run accompanied us. The wards were filled with children: beautiful, almond-eyed children suffering from various blood diseases, attended to lovingly by their mothers. I had brought some Beanie Babies with me and shared them, much to the delight of the kids. It was a good meeting and I learned more about hemophilia in Cambodia. To
think that since 2008 only the WFH and us, Project SHARE, have supplied them
with factor! These are the moments when I realize what a far-reaching impact we
have had—and yet realize we need to work harder to help. While there, Sr. Sophal only had about 30 boxes of FIX in the fridge, and that he said would
last him two years!
We learned: most patients are still being treated with fresh frozen plasma, and yet the blood donation culture is not good; so they use donor-designated plasma. The public hospital does charge a small fee for any service, which is a burden to families. In 2014 they initiated inhibitor testing. Cost of factor? 500 IU costs $300… no products are registered. No one can afford to buy products. There are 91 registered patients of all bleeding disorders. With a population of 15 million, there should be about 1,500 with hemophilia; the oldest known person with hemophilia is about 40.
Laurie with Lyuthara
One patient attended, Lyuthara, about age 24; he was quiet, thin,
with enlarged knees. He has hemophilia A. We gave Dr. Sophal our gifts of
CryoCuffs and factor VIII. He immediately shared some with Sithan, who was nursing a postsurgical wound in his mouth. He had had his wisdom teeth extracted last week, and one required a stitch.
Friday, October 3. This was a lovely day, because we were doing home visits, my favorite activity when I visit a country. (well, rafting and mountain climbing rank high too!). The weather remained cooperative: sunny, but very hot, about 90°, with some humidity. We had breakfast in the nice
dining room, which was decorated tastefully in Cambodian fashion: dark wood, soft cushions, carved statues of Ganesha, Buddha, and elephants. But it was playing some awful and loud music: pop and show tunes. We had to
ask them to turn it down so we could even talk.
Sonee, age 6. hemophilia A
After breakfast we headed out to see families. The first one, Mien, lives on the outskirts of
Phonm Penh. (Phnom means hill). We took our very lovely hired van, with AC and even a
TV screen, avoiding the morning air, thick with exhaust, dirt and grit. Many
people on motorbikes use surgical masks to protect themselves. While the
traffic is moderately heavy compared to other countries, it moves quickly and
deftly. We passed the stunning Royal Palace on our right as we took off.
Down some dirt
roads, out past fields, farms and rice paddies, and about an hour later we arrive at a quiet dirt street. The house is up on posts, to protect it from flooding. The family is gathered below, under the house, quivering with excitement to see
us. Chickens strut about, oblivious to us. All the children, cousins, are huddled together, waiting. We make our greetings: there are so many
people, I am not sure who to look at first. Sithan introduces us: mother,
grandmothers, children. The culture here, as in many developing countries, is
for families to live together. So it’s not uncommon for families to live under
one roof, or in a compound. This is a compound. And these are loved children: they
are happy, giggly, a little shy of the white strangers. Two boys with
hemophilia: Sonee, born 9/12/08 (who wasn’t feeling well), and Sokheang, age 4,
who has a bit more meat on him, not in school yet.
Ly Heang, age 4, hemophilia A
This was an opportunity for Martha to teach Sithan how to perform the initial application for a family
to join Save One Life. She asked the questions, noting the answers, and sharing her thought process with Sithan: the child’s
name, birth date, siblings, family income, health status, bleeding episodes. It
is actually a lot of work, but it gives the hemophilia association members time
and chance to get to know each individual family who is part of their
association. Home visits are so important! You can see the living conditions,
meet family members, assess needs. Sometimes we uncover problems you would
never see by just a family visit to the clinic: special needs like want of a
wheelchair, a house with no toilet or electricity, or alcoholism in the family.
Fortunately, none of these problems exist here. The family is large, unified, healthy and happy. And poor: though they live in a “compound,” the combined family income is only
$150 a month. The mother works in a factory, the father is a driver. A humorous moment occurred when Martha ran down her list: is there electricity? Check. Bathroom? Outhouse, check. Own home? Check. Running water? No, well water. Check. Fridge?
The women all looked at each other, then burst out laughing. Probably like asking one of us if we have our own private jet!
While Martha asked questions, I decided to give the children their gifts. The two brothers with hemophilia got red Save One Life bags, with special gifts inside. The others got Beanie Babies, and they were enchanted! They went from displaying a cool but polite demeanor, to gabby, giggling and connected. We smiled, made eye contact and I reached out to tickle one playfully. All children understand games. When I duck behind a post, like
peek-a-boo, they immediately seek me out and then act surprised or scared when they see me. They love the stuffed animals.
Sonee wasn’t feeling well. He had crayons in his bag, but I’m not sure he has ever used crayons before. He didn’t seem to know what to do with them. So I motioned for him to come here. Noting he had on a Mickey Mouse sweatshirt, I showed him how to draw Mickey. No smiles. No smiles for the camera either; just not a good day for him.
Cousin Panuuk stole the show. What bright eyes, inquisitive personality, and mischievous smile! He
captivated everyone. A natural in front of the camera, I confess I took many pictures of him, to catch all his varied expressions. All the children were exceptionally beautiful.
The mother was so grateful to us for our visit. I observed her very nice clothes, probably her best, wanting to make the best possible impression. As we said our good byes she hugged me.
After this family we had lunch, and then went to see another at 2 pm, not too far away. This
visit was quite different. The family of eight, two parents and six kids, live
in a three-room house right in the city, on an extremely busy street. One room is a small storefront—basically a counter in front of a small room with various supplies stacked up. Out front,
a small refrigerated stand that serves ice cream and cold drinks. Only the mother and son were present. The boy, name unknown yet to me, was sitting on the small cot, one leg tucked under him,
his knee swollen; he was pale, remarkably thin, without musculature, and
sullen. The mother, age 49, was hyper and stressed. She sat on the floor next
to her son, and talked incessantly, while her son stared down at and played
with his overgrown fingernails. I’ve been in dozens of homes of the poor, but
this one really made me look hard. They are not as poor as most: there are two
cameras on tripods, so they own a side-business of taking photos. She has a
good inventory in the store of food, toiletries, batteries. But her house— what
a disheveled mess. Things stacked helter-skelter, dishes dirty. No place to
wash, or even cook. I don’t think she does cook. Many homes are dirty due to the
nature of where people live and lack of access to water, but most are organized.
The lack of space means people get creative with being organized. This was just
a random mess. It bothered Martha and me. And the boy, age 15, but looking like an eight year old, is
malnourished and weak. He isn’t attending school yet this year because he can’t walk on one
leg. He doesn’t want to be taunted. Later he added that there are five floors
to his school. PT is $10 a session. I told Sithan this is where he can make a
big difference as a “big brother” and mentor. This child needs physiotherapy,
and more than that, an attitude change. When we asked him questions, he looked
annoyed, lifted his head, and then dropped it.
Usually families put on the their best foot forward when they know they have foreign visitors arriving, who are offering them help. Still, we decided we will enroll him, as it will be a chance for CHA to monitor him,
and for him to offer something to his family, besides being a burden. We compared notes on the ride back, and Sithan said, The mother is stressed and the child is depressed. I know; I have been depressed. But even in families were the child has suffered immeasurable, I have always seen some glimmer of hope. Here, there needs to be a glimmer. Perhaps a sponsorship will show them that there is hope, and that they are cared for.
To sponsor a child with hemophilia in Cambodia, visit www.SaveOneLife.net
The beautiful speech given at NHF by chair Jorge de la Riva stressed caring, and the dangers of indifference. Jorge, the father of a teen with hemophilia, deftly drummed home by a quotation from Holocaust survivor Elie Weisel, whose book Night, I just reread a few weeks ago:
“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.” ― Elie Wiesel
How appropriate to use Weisel to remind our community that if we do not watchdog our own interests, we may be hurt–again. And this is why the theme of this year’s meeting was “Nothing about us, without us.” More and more, NHF (and HFA and other groups) are steering the interests of the community, from research, to data collection, to blood supply safety, to genotyping. We’ve come a long way in 20 years, and paid a hard price.
Derek Nelson and Chris Bombardier
Val Bias, CEO of NHF and person with hemophilia, gave a speech on the many and exemplary accomplishments of not only the NHF but of various groups and individuals in our community. During the videos shown, I thought instead of two people who have done extraordinary, history-making things in our community, just this year—Chris Bombardier, the first person with hemophilia in the world to conquer four of the seven summits. And Barry Haarde, who has now ridden his bike three times across America, to bring attention to the public of hemophilia and HIV. It’s nice that we showcased who we did, but Chris and Barry volunteered weeks of their lives to do something no one else has ever done, which are extraordinary feats even without hemophilia!
We did acknowledge them, at the Save One Life Celebration on September 17 at the Intercontinental Hotel in Washington DC, just before NHF kicked off. It was a lovely event, with about 77 attendees, including donors and sponsors. We honored special people who have helped make Save One Life a success so far:
Over 1,300 people with hemophilia in 12 countries who live in poverty supported directly with financial aid 80 scholarships to foreign individuals since 2012 8 micro enterprise grants in 2014
Over $1.5 million in direct aid!
Laurie with friend and colleague Val Bias, CEO of NHF
All this goes to people who live on the fringe of life, the poor, the suffering, in places like India, Zimbabwe, Pakistan and Honduras. And we honored Chris and Barry who have raised so much money for us. And our Inspiration Award went to Mark Skinner, former NHF president, WFH president and current WFH USA president (and personal friend) who has inspried me for many years with his brilliant insights, his compassion for the poor and his endless volunteerism. Accepting the award for him was Mike Rosenthal, executive director of WFH USA. We were surprised and pleased to see Doug Loock in attendance, who, back when he worked for the American Red Cross in 2000, gave us our first grant, and was the first supporter to help us!
Thanks to NHF for allowing us to hold the even at their event (thanks, Val!); and to ASD Healthcare (thank you, Neil Herson!) for being our major supporter of the event. Also thanks to Baxter, Novo Nordisk and CVS Health for supporting the event.
Best news of all? We picked up 30 more sponsored children as a result!
If you want to learn more or support a child, please visit http://www.saveonelife.net
Laurie with Neil Herson, president of ASD Healthcare, accepting award for Chris BombardierUsha Parasarathy accepting award for Program Partner of Year
Great Book I Just Read Blood Meridian [Kindle] Cormac McCarthy
The author of No Country for Old Men does it again. This is a masterpiece, an American classic, written with such skill and depth that you cannot skim, cannot rush; it has to be savored, thought about, explored. The main character, a young man only referred to as “the kid,” runs away from home in the south and heads west in the 1800s. He meets many groups and characters, but ultimately joins a scalping posse, intent on capturing as many Indian scalps to sell as possible. Like many of McCarthy’s stories, the theme is bleak, desperate, dusty and desolate, like the land the kid crosses. The main theme seems to be that evil lurks everywhere: there are no good guys or bad guys in the Wild West: just survival. And every single person, whether Indian, white, male or female, harbors evil deep within in the quest for survival. It’s a somber read, but the writing style alone is like a delicate fabric of words, woven so that you see no seams, only a beautiful, dark, and captivating cloth; worth reading if you want to read something by a master. Five our of five stars.
Whenever I see an adult on a bicycle, I have hope for the human race. ~ H.G. Wells
Hope for the human race was abundant Saturday morning downtown in Springfield, Massachusetts, where 240 cyclists of all ages, races, genders and professions lined up to cycle 106.7 miles to the State House in Boston. This was the second annual “Ride to Remember,” to honor fallen police officers and to raise money for their families. “Fallen but not Forgotten” was the slogan, printed on the back of the 240 riders’ uniform shirts, colored police-blue.
I scanned the swelling crowd at 6:15 am: the riders’ adrenaline flowing; the air
chilly and moist; the bikes being unloaded and tires pumped; the massive
American flag unfurled from two cranes in the semi-dark; the dawn just breaking
over what would be a perfect-weather day for an endurance ride; support buses queueing
up and repair vehicle positioned in place.
Laurie, mother Eileen Morrow, brother Tim
I was riding with my younger brother Tim Morrow, a 30-year veteran of the Springfield Police Department,
now a K-9 officer, his wife Lee, on her first “century” ride, and my boyfriend Doug, a marathoner and endurance athlete. The riders were police officers, fire fighters and family members from all over Massachusetts. 106.7 miles later we would be at the State House for a ceremony to honor the fallen.
The Ride to Remember honors officers Kevin Ambrose and José Torres, both killed in the line of duty two years ago. Kevin was the first Springfield officer killed in action in 25 years; he was just about to retire, but was killed while helping with a domestic abuse case. It’s a chilling reminder to those of us who take the law enforcement for granted about how dangerous these jobs are.
Despite the nippy air and early time, I was grateful to see my sister-in-laws, who came to hug us and wish us good luck. And my 82-year-old mother, Eileen Morrow! She probably should have been riding with us, as she has enough energy and willpower!
After pumping our tires up and joining the bulging street of riders, I looked down and saw bad
news—my front tire was flat! I jumped off, ran to the far back of the crowd where the vehicles were, Doug following, searching for the repair vehicle. Meanwhile the clock was ticking as the riders were clipping in, ready to. I finally found Steve, the repair guy, and in 30 seconds he had me ready to go. Clip-clopping on my cleats, juggling my bike, sprinting back to the riders… but they were gone.
I hopped on my bike and Doug and I pumped hard to catch them. It was exciting, because we
had to slice right between a parallel line of police motorcycle escorts until we became the last of the riders in the group. It was cold; by mile 10 our hands were stiff, noses running. I found that I couldn’t shift to the big gear because my left hand simply wouldn’t obey—too cold!
The first leg, to mile 18, was the hardest for me, incredibly. I had spent the last few days in
Washington DC at the NHF event, and while I hit the gym once, I didn’t feel warmed up; the cold air wasn’t helping. After the first break in Palmer, MA, where the support staff served boxes of bananas, bagels, Clif bars and Gatorade, we fueled up (you must keep eating throughout the ride), stretched out and within 15 minutes were back on the road. We immediately hit a hill; there would be many tortuous hills on this long ride, which tested not only your aerobic capacity, but your quad strength, and your mental fortitude. Honestly, I kept hearing in my head, “I think I can, I think I can…” Tim and Lee were somewhere ahead of us; Doug stayed in the large gear (the hardest) the entire 106.7 miles, and powered up every hill. That. Is. Crazy.
Ouch
Life is like a ten speed bicycle. Most of us have gears we never use. ~ Charles M. Schulz
There would be five rest stops. But you must also drink a ton of fluids and these catch up with you eventually. At one forced stop in the middle of a narrow country road somewhere n mid-Massachusetts, to wait for the huge group of riders to catch up with each other, I decided, like a lot of riders, to use it to my advantage. We hopped off our bikes and headed for the woods. The men went one direction to the edge. I delved a bit deeper into a more remote spot, where I thought there were an awful lot of thick vines. Vines? I tried to pull them away and step over
or through them—ouch! Rusty barbed wire. One sliced my knee a little; I thankfully didn’t get a piercing where none was desired and I headed back. A little drama is good for the story and the medical crew was delighted to have something to do.
When the spirits are low, when the day
appears dark, when work becomes monotonous, when hope hardly seems worth
having, just mount a bicycle and go out for a spin down the road, without
thought on anything but the ride you are taking. ~ Sir Arthur Conan DoyleAuthor of Sherlock Holmes
Back on the road and the rest of the ride was wonderful. I hit a little “wall” at mile 40, just
feeling like I could easily nap, but oddly, by mile 60 I was revved up and
flying. We took hills doing 15 mph at times, and flew at 32 mph downhill. We
had a police escort the entire way, so were well protected from cars. All
traffic was stopped as our entourage sped through intersections, town centers,
crossed highways, thumped over railroad tracks. I took only one spill when, to
avoid crashing into another cyclist, I couldn’t complete a sharp left turn to
cross railroad tracks at a 90 degree angle. My tire went right into the track
groove and I gracefully slid to the ground. No harm done. Doug and Tim had a
crash—together! Other riders had several crashes and there were many chains
that fell off.
By 5:30 pm, we
rode into Boston, past the famous Citgo sign, with crowds along the way
cheering us on. We swarmed together like bees as we pulled into the State House
and congratulated each other. I was so proud of Lee, who had only taken up cycling
this past spring. This goes to show what training and determination can do
(though she seems to have some natural talent). And Doug was outstanding, and
now hooked on cycling. We’re going to sign up for some classes this winter with
a pro to learn how to improve our performance.
And I’m proud of my brother Tim, his K9 partner Cairo, and his brotherhood of police officers
and firefighters (my older brother Tom Morrow is also a firefighter!): what wonderful public servants and what better way to tell them, to show them, how proud we all are: spending out day on a physically grueling ride, with such positive feelings, surrounded by some of the most honorable people you’d ever want to know.
Laurie, Doug, Lee, Tim
It’s a lot like our hemophilia community, with so many of our brothers lost to us forever due to someone else’s negligence, there are so many
fallen, but never forgotten. I think of Barry Haarde and his remarkable Ride Across America, doing an average of 120 miles a day—a day! Think of it! For 30 straight days. It seems humanly impossible, until you realize that when you have a passion, a cause, an injustice to fix, and some training and a goal, almost nothing is impossible.
Ever bike? Now that’s something that makes life worth living!…Oh, to just grip your handlebars and lay down to it, and go ripping and tearing through streets and road, over railroad tracks and bridges, threading crowds, avoiding collisions, at twenty miles or more an hour, and wondering all the time when you’re going to smash up. Well, now, that’s something! And then go home again after three hours of it…and then to think that tomorrow I can do it all over again! ~ Jack London, Author
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?
Bill Boughton, a 91-year-old gentleman
Not she, but he! 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.
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.
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.
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.
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.
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.
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!Laurie in front of a “Vampire”
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.
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.
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 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.
I admit I am an adrenaline junkie. I have a need for speed, love a good rush and look for ways to release the adrenaline flowing through my veins: big water rafting, cycling, running, bungee jumping, skydiving. When none of those are available, I hop on a roller coaster!
Luckily I have a sweet amusement park 20 minutes from me, that features “The Corkscrew,” and the “Yankee Cannonball.” The Cannonball is an ancient roller coaster, you know, the wooden ones that shake, rattle and roll. Scary and thrilling. Last time I went on it, I could barely move my neck. So last night I tried the Corkscrew, a metal, smooth gliding, super fast coaster that goes upside down… all while it’s playing “Stayin’ Alive.” Really.
But this one also gave me a supreme headache. I have a touch of arthritis in my neck, and am noticing it more and more as I get older. I need to take care of my head.
So do our kids with hemophilia. As coasters get more rickety, or faster… we need to protect their heads. How safe are roller coasters anyway?
In one report, the Nationwide Children’s Hospital in Ohio stated that about 4,000 injuries happen annually from roller coaster rides.
This begs the question: are they safe for children with hemophilia, aside from accidents?
First, take some common-sense precautions:
1. Obey the listed age, height, weight, and health restrictions. Your child grows each year grown since last year — is
he tall enough to make it? Don’t let him get on if he isn’t.
2. Watch the ride first, so you know what to expect. See how riders are loaded and unloaded. Watch how the safety belts are fastened first, so that when you get on the ride, you know what to do.
3.Ask the park employee questions what they think. Tell them to double check your safety belt.
4. Keep you head, hands, arms legs and feet inside the ride at all times. It’s important to keep all body parts inside the vehicle while it’s moving. Put you hands in the air for that first drop, but be sure to return them to your car for the next part of the ride.
5. Keep your eyes looking forward and your head up to protect your neck from injury. Roller coasters are prone to sudden accelerations and abrupt changes in direction. Keep you head up and looking forward to ensure the sudden jerks don’t hurt your neck. (I cradled mine against the head rest to prevent the neck-snapping turns)
6.Wait until instructed to remove your safety belt/lap bars/shoulder harnesses and exit the ride.
7. Take frequent breaks between roller coaster rides. Give your body time to rest and readjust before jumping onto the next coaster. If you start to feel unwell, dizzy, nauseated, don’t ride!
8. Don’t get on a ride that looks poorly maintained. If your gut tells you that wooden coaster looks too rickety, opt out. Especially on those road-side, temporary carnivals.
9. Never stand up while a ride is in motion. If something happens and the ride stops mid-ride, fight the urge, stay seated, and wait for an operator to give further instructions.
10. Give your child a prophy dose before going to the park. Bring his supplies with you… just in case! And have him wear his medical ID jewelry.
Book I Just Read
The Art of Racing in the Rain 2013
Garth Stein
Easy to read, sentimental, and recommended by a friend, I was unfortunately one of the 97 out of over 4,000 on Amazon.com who just couldn’t get into this fictional book. A story told by Enzo, a dog, whose owner wants to pursue his dream to be a world-class sports car racer, it’s also a story about grief, loss, statutory rape, separation… all heavy topics related
by a dog, which doesn’t act or sound like a dog. It’s a bit gimmicky; the writing is not that good, and it’s just not a sophisticated book. A much better book with the POV of a dog is A Dog’s Purpose, or even better The Story of Edger
Sawtelle. One out of five stars.
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When Save One Life executive director Martha Hopewell and I arrived at
