You may have heard that in March 2019, the $1 million prestigious Global
Teacher Prize was given for the first time to a teacher from a low-income
country–Kenya. Peter Tabachi teaches science and mathematics at a secondary
school in a remote village in Kenya, and traveled to Dubai to be given his
astounding prize by actor Hugh Jackman.
“This prize does
not recognize me but recognizes this great continent’s young people. I am only
here because of what my students have achieved. This prize gives them a chance.
It tells the world that we can do anything.” —Peter Tabichi
The majority of his
school’s students are from poor families and almost a third are orphans. The
school has one computer and there are 58 students per teacher. But Tabachi has
achieved extraordinary things with his students, showing that it doesn’t take
much to change lives.
And we at Save
One Life believe that, too. During our recent visit to Kenya, we assessed our
beneficiaries and we were most impressed with Javan Odwar, a young man now
attending college, thanks to a scholarship from Save One Life.
I’ve known Javan
since he was 9 years old; I’ve been to his home twice. It is a one room
dwelling, for originally four children and parents. Javan is the youngest;
since I last saw him, three years ago, his older brother James passed away.
Javan and his sister Moline have von Willebrand disease. But nothing seems to
stop them from achieving goals. And education is the ticket out of poverty.
With a new team
of supporters, including Save One Life executive director Chris Bombardier, we
traveled not to Javan’s home this time, but to his college, to see how he was
doing. With us was Maureen Miruka, founder and president of the Jose Memorial
Haemophilia Society, our program partner, and JMHS program coordinator Sarah Mumbi.
Through the bustling streets of Nairobi we went on August 1, down some side
streets, and finally at the college.
Now, when you
think of college, you might think of ivy-covered New England brick buildings,
or glass and brass city buildings, or maybe concrete block community colleges
on the outskirts of towns. But not here. The Kasarani Catering College is a
storefront on a dirt road. As you step inside, you enter a concrete-walled
room, with chipped-paint décor, a banner, and a plastic table and chairs for ten.
The stove was a hub of activity—clearly we were going to be fed lunch at 10 am!
The students were busy preparing a feast.
Maureen filled us
in: this was an example of the Kenyan government trying to expand education to those
of lower economic means, by supporting middle-colleges. Rather than attempt
four years, this trade “college” (essentially a one to two room storefront converted
into an education center) would train young people to serve in the growing
tourist sector as cooks and waiters. Or perhaps work as caters for weddings and
other special events.
Javan couldn’t have
been more proud. Impeccably dressed in black and white, he ushered us to our
seats, and also entertained us by grabbing his acoustic guitar and singing for
us songs he wrote! He has a lovely voice and is talented. One song was about
having a bleeding disorder. Besides what will become his day job as a caterer,
he hopes to make it as a recording artist as well.
The effort made
by everyone was great. The young team of cooks prepared a feast of meat, rice
and vegetables. I didn’t think I was hungry until I smelled and saw the food,
and then I ate everything! While I ate, I noted the simplicity: on the wall were
nails, on which the utensils would be hung; they were marked by simple,
hand-written labels fastened with tape.
We are very proud
of Javan. For me, knowing where he comes from, and seeing his ambition, and now
having a scholarship from Save One Life and a college funded in part by the
government, gives me security that this young man will make it. He will rise
above poverty, as the next generation should, and become self-sufficient. He
has big dreams. Our mission is to help him reach those.
Thanks to Patrick M. Schmidt of FFF Enterprises for his sponsorship of Javan through the years.
mere animal pleasure of travelling in a wild unexplored country is very great.
When one lands of a couple of thousand feet elevation, brisk exercise imparts
elasticity to the muscles, fresh and healthy blood circulates through the
brain, the mind works well, the eye is clear, the step is firm … the mind is
made more self-reliant… No one can truly experience the charm of repose unless
he has undergone severe exertion.” —Dr. David Livingstone
I don’t know about the mind working so well at high elevation, as
mine seemed to work a bit against me just before the summit, of Kilimanjaro, but I do know about the charm of repose, as I
am writing this from the exotic island of Zanzibar, a place Livingstone knew
well. This is where he ordered supplies and hired porters for his trips to the
interior of the “Dark Continent,” so called because on maps it was largely
unexplored. I thought about Livingstone’s biblical sufferings while I tried,
for the third time, to summit Kilimanjaro, all to raise money for Save One
Life. I did summit twice before, in 2011
and in 2016. But this time seemed at once easier—been there, done that—and
harder—that much older, and lacking the prep time needed.
Want to know what it was all like? Read on!
Monday August 5, 2019 DAY 1
Day 1 on the mountain is done! I’m lying in a dusty tent, snug in my 0° sleeping bag, everything organized and ready for tomorrow’s hike. My sleeping bag is an engineering marvel. It compresses down to a small package but traps heat so well that even in 0° weather you can sleep pretty much naked and not feel cold. I did the entire 4.5 hour climb today with no problem. I wasn’t wearing my pack this time and felt like I was cheating… but it was a good call. I had a two-month, off and on back spasm this spring, which finally resolved but not in enough time to really get strong for the climb. A knee injury May 6 forfeited all my running, which would have helped aerobically.
We had a long drive to Arusha, Tanzania, from Nairobi, Kenya. We
were all up and ready by 7:30 am. The drive took about 8 hours by bus, which we
thought might be easier than flying; I flew last time and some of our luggage
didn’t make it in time for the climb. It’s just a bit nerve wracking! The bus
was easier, and we saw the countryside, and made new friends! A group of Polish
people hopped on too, and one of the guys, Michael, was quite the clown! Wiry
with crazy blue eyes, he kept us laughing… and he was drinking something from
his “water” bottle! In fact, we would see him and his team on the climb, and we
were pretty sure he was drinking each night into the climb, which is insane!
Once we got through customs at the border of Kenya and Tanzania,
we enjoyed the Tanzanian countryside. What a change from Kenya! There is a
drought, and the landscape became dry, dusty, stripped. Dust devils swirled
madly in anger on either side of our highway. My teammates were giddy with
excitement; our trip was really starting.
We finally arrived at a place I know well—Kibo Palace hotel in
Arusha. I really like Arusha—a small city at the foothills of Mount Meru and
Kilimanjaro. We quickly checked in. Then the guides arrived: Jackson Tsui, a
tall Tanzanian with a soft voice, and Edwin! I had Edwin as a guide three years
ago! And Jacob Slaa, who climbed with me in 2011. What are the odds?
Back at my hotel room, we had to pack for a 6-day climb; I
finished my blog and saw that I hit my fundraising goal: $10,000! This helped
me have a wonderful night’s sleep before the climb started.
Our team? Wendie and Ric Chadd from California. Wendie and I have known one another for 20 years. She and Ric have a son with hemophilia, and Wendie works for specialty pharmacy NuFactor, owned by FFF Enterprises, whose CEO and founder, Patrick Schmidt, is a longtime friend and supporter of Save One Life. Mike Adelman: senior vice president of Aptevo, which makes Xinity. He climbed and summited with me in 2016. His friend Jim Palmer, and son Sam (age 14). Jim is surgeon from Philadelphia—friendly and positive. He also summited with me in 2016—lots of suffering on the way down on that trip! Myles Ganley, person with hemophilia B, age 25. Strong and fit! Shannon Peterkin, ex-Navy from Louisiana, big as a mountain himself. His red hair and prominent beard led the guides to nickname him “Simba,” which means lion.
We took a two-hour bus ride to the Machame Gate (5,718 ft), and waited for paperwork to be done, and for other groups to set off. Then through the gate and off we went! Through the rainforest we trekked, gaining altitude. The forest is thick and primeval, with trees and vines covered in green velvet. The air was thick and moist with growth and rot. We needed to go pole, pole (slow, slow), and Edwin set the pace. Jbiri was the young porter who carried my pack, which was light anyway. Mike and I were the first to stroll into camp, at Machame (9,927 ft). We signed in, then Edwin took us to our camp.
We didn’t eat till 8:30 pm but everyone was laughing and joking. The
30 porters carry everything we need for 6 days. Tonight we had fried tilapia,
fries and spinach. Outside, the stars were shining bright. You could see the
Milky Way streaking across the sky like a diaphanous scarf.
Tuesday August 5, 2019 DAY 2
It’s chilly! We were all awake at 5 am, from the
rustling and chatting of the porters in the frosty air as they packed up camp. We awake with hot tea in our sleeping bags,
brought each morning by two of the porters, who carefully add sugar and milk,
or whatever you like. A hot bowl of water follows, and since you cannot shower
for 6 days, this little bowls becomes a very precious commodity! You quickly
learn to appreciate the simple things. Breakfast was omelets, fruit, toast, and
oatmeal. Jim and Sam look tired this morning, and are not feeling well. So early in the trip, this does not bode well.
We started hiking after camp broke, and did the half day climb up,
and up to Shira Cave Camp. Single file, taking huge steps, at least at a 45°
angle, if not steeper. This was one of my favorite parts of the climb. It’s like
climbing Mt. Washington for 5 straight hours. Rocks everywhere! Sometimes the
ground was a single molten lava rock, lumpy but smooth. We saw our first senecios,
funny-looking trees related to the daisies.
Our quads got quite the wake-up workout today! We arrived at Shira Cave Camp (12,355 ft) around 3 pm. Jim looked very wan. Sam was feeling better. I was with Jim in 2016, and he was strong right till summit night, so this was not right for him. Eventually Jim decided not to go forward; he and Sam packed up and with one guide, Prosper, and two porters, they left.
We would miss him; his smile and positive attitude really helps
everyone in a group that eventually would suffer. But all went to our tents and
I slept from 9:20 pm till 5 am again. I felt fantastic, totally enjoying
everything. But now Shannon wasn’t feeling well.
Wednesday August 7, 2019 DAY 3
We awoke to another chilly morning. But we could see our goal, Kibo summit, in the background! We had oatmeal, eggs, pancakes, toast and jam for breakfast. We were off by 8 am, to Barranco camp, which would take us 8 hours. Within 30 minutes we were warm and began discarding jackets. I forgot the path went upwards so much, through scruffy little hills, and huge boulders, spewed out of the volcano probably a million years ago!
The view was spectacular, the sky blue. We were looking down at a
solid cloud cover, like cotton balls forming a welcome mat. And to the west,
Shira Mountain and Meru popped up through the cotton, and to the East, Kibo,
summit of Kilimanjaro. Situated near the fault-line of two tectonic
plates, Kilimanjaro began to build itself up around 750,000 years ago, via
thousands of years of lava explosions from the volcanic cones of Shira,
Mawenzi, and Kibo.
Shannon didn’t eat at all as the day went on, and we determined this
was a bad combination of Diamox (altitude medicine) and malaria meds (which he
didn’t need). Perhaps this is what Jim suffered from too?
I felt great, strong and focused. Lots and lots of hiking,
and all good. We all seemed to need to pee every hour—a side effect of the
Diamox. It got so ridiculous that we were all losing our modesty quickly.
We stopped at the 300-foot Lava Tower, all in good spirits but
starting to feel the altitude at about 15,000 feet now. Lava
Tower is a “volcanic plug”; at some point long ago, lava spewed out of a vent
at the base of where Lava Tower now stands, cooled, and hardened, thus stopping
up the vent beneath.
We had another nice lunch, then packed up and headed down into
the Barranco Valley. As I predicted, it was chilly, temps dropping as we
lowered ourselves down the rocky hillside and into the barren valley. I also
love this part of the hike! Maybe just because I know this so well. But here we
saw the towering senecios and other strange looking plants, like something from
a Dr. Seuss story, the Lorax, or from one of the movies where people go back in
time to the dinosaur age. We seemed to shrink as the trees towered over us. Ric
and Wendie loved it. We finally arrived at camp (Barranco, 13,066 ft), and saw
the intimidating 800-foot Barranco wall, which we would climb in the morning. So,
we climbed up to 15,000 ft then climbed down, to acclimatize. Dinner and bed
Thursday August 8, 2019 DAY 4
This was the day! This very night we would begin our summit
push. But first, we had to get out of the Barranco valley. Again, we are awoken
each morning in our dusty, cold tents, by two young porters who quietly and
gently bring us tea, coffee or hot chocolate, even as they are bundled up and
facing the cold. They gently and respectfully pour the hot water, dip in the
tea bag, stir in the sugar, until it’s just right. Then they zip up the tent when
they leave; I feel spoiled. I get to have hot tea with cream and sugar while
still in my sleeping bag. Even though we have gone without showers for 4 days,
and are covered in dust, we feel like royalty having hot drinks in a tent!
We are pumped at breakfast. Shannon is feeling better, now
that he has stopped taking malaria pills. He makes an amazing recovery and
starts eating again. Jackson wants to be one of the first out, so we start out
around 7 am. Straight up the Barranco wall, until we are about an hour later
doing a “scramble,” hand to foot. The guides are there to help us. We have to
navigate “kissing rock,” so named because you have to hug it in order to slide
around it. A bit hairy! We each look back every 20 minutes or so, and the camp
we just left gets smaller and smaller. Mike cracks a joke about the strange
yellow tents that are all connected, like gerbil tunnels. They haven’t started
to break camp yet. I joke back that maybe they can’t find their way out?
I’m not using poles but just powering up with my quads,
Everyone is doing great. Before long we reach the top, and
the view is glorious! To our left, the east, with the sun starting to shine
above the clouds (we are above the clouds!), and below us, colorful dots that
are the tents that made up our camp. We pause for water, and photos. And
always, a bathroom break.
Then we start the hike down, which takes the rest of the
morning and into the afternoon. It’s a long slog, down from the wall, had to
foot, carefully, down sidewinding rocky paths, and finally onto long stretches
of dusty trails. We would hike about 7-8 hours this day, all the way to Barafu Camp
(15,239 ft). Still, I felt good, solid. Shannon was recovered, everyone was
doing well. We reached the camp, and our tents were already pitched. It’s very
rocky here, chilly, but nice when the sun is out.
Soon we had our dinner, around 5, and straight to bed, after
sorting everything out gear wise. I fell right asleep for 4 hours. In fact, I
got the best sleep and felt great. So what happened that night to me?
We put on our gear at 11 pm, getting ready for a 12 am
departure. Base layer of wool; fleece pants and top. Puffy coat. Rain pants
over fleece, and my EMS tough jacket that goes everywhere with me. One iPod was
dead, but the other seemed to have full juice. I was feeling so good I didn’t
feel the need for it! Water, gloves, hat, and we were ready to go. Off into the
chilled night air; I figured it got to about 20°, which isn’t bad at all, and
later when the wind came, about 10-15°.
It was all good.
I felt strong with no digestive issues at all, this whole
trip, and had a full stomach of pasta. From 12 am-5 am I felt great. The summit
push is all short switchbacks, one foot plodding after the other. Things could
not have been better. At 5 am we took a break, and Ric, sitting on a rock,
looked crushed. He asked Mike for some motivation. I gave him some: You can do
it! You’ve come this far! It’s only about an hour! He rallied and pushed on.
Jacob had given me Red Bull around 3 am, freezing cold and tasting bitter, but
I guzzled it, knowing from experience it can really help. I don’t recall ever
feeling bad or sore. Just a bit tired, as the legs slowed.
I looked up from time to time to see the stunning white stars in the black heavens. I thought: They are beautiful, but cold and unfeeling. They have no pity. Not like our guides: they were great. Warm, caring, always there to help. Team Kilimanjaro! My favorite moment was when Myles reached down to give me a hand up. Myles, the youngest, and with hemophilia, was crushing this mountain! He made it look easy. The stars stood back with a cold, clinical eye to all our suffering. It was harder to breathe as we went on.
Wisely, Jackson put Ric first. I recall when Jonas did that to me in 2011; I was flagging so bad, and thought, Oh no, I will slow down the pack! But just the opposite: I picked up steam! But come 6 am- 7 am, I was definitely slowing. The sun came up below us, lighting the clouds pink from underneath. My feet: it started as forward stumbles, like I had stepped on wobbly stones. I tricked myself into believing I had just tripped on some rocks.
Then side to side stumbles, like I was drunk. I kept
apologizing to Jacob, as I thought I was not paying attention. My mind seemed
sharp and my core was warm, and I was not ill; what was wrong? I had never
overall felt better on Kili. But little by little, it felt like every little
stabilizer muscle in my feet and ankles were giving away, like the snapping of
suspensions on a bridge. I kept stopping, trying to get O2 to my feet and
muscles. On KIli, at this point, oxygen was about 50% of sea level. Like trying
to do spin class while breathing through a straw, someone told me.
Pretty soon, my legs were just collapsing, and once I even held onto a big rock, just to stay upright. And Stella Point (18,848 ft) was a mere 65 feet away, but straight up, the steepest part of the entire climb. How could I possibly reach that? Our team pulled further and further away, and my feet grew more and more useless. Jacob was determined to get me up there.
This became a battle between my rational brain, my legs, my
willpower. All screaming at me at 18,000 feet.
I think I knew too much. This was my third climb up
Kilimanjaro. The first summit was in a blinding snowstorm with -5°. Jonas
dragged me up. The second summit I did with relative ease. Listening to Metallica
on my iPod, encouraging another climber, dancing with the porters, I did fine.
But I bonked big time on the 3-hour descent, and my legs just dissolved into
gelatin. I was thinking of that while hugging the rock. How will I ever get
down? It will take me another 1.5 hours at least to summit and then I have 3 hours
down… It seemed impossible. You can’t climb if your legs don’t move and I could
not will them to move.
Of course, I could have done it. I did it the first time and
second, under worse circumstances. Now, the weather was excellent, and I was
fit. But I wondered if having a back spasm for two months off and on, and then
an injured knee for two months helped ruin my workouts.
And psychologically, I thought, Been there done that. I’ve
summited, I have nothing left to prove! But it still eats at me, even as I
So Jacob and I headed down; within 30 minutes I was getting
more O2 to my legs, and was able to walk well. That’s all it took! We got back
to Baranfu at 10 am, and I knew my teammates were just starting their descent. I
cleaned up, ate some breakfast, tried to sleep (no way), and just waited for
everyone. They appeared around noon; Shannon was exhausted! Ric and Wendie went
right to sleep.
I felt cruel but I had to wake everyone up at 2 pm, so we
could head out. Shannon was so tired, and Jackson made the good call to not
descend to Mweka Camp (10,204 ft), which would require a 5 hour hike! Could you
imagine? 7 hours of hiking, followed by an 8-9 hour summit hike straight up,
three hours down, then another 5 hours, all on about 4 hours of sleep? It was
only 2 hours to high camp. And it was a lovely walk down; we finally got to
groomed trails, the valley to our left, lush and green. So different than the
dusty, barren plateaus we were on! The sun was up, it was warm again… the night
seemed a distant thought.
Why did I quit so close to the summit? Knowing too much,
having summited before, and not enough aerobic practice? I don’t know. I wish I
hadn’t quit, but I did. But I was so glad out team summited, and I was proud of
Saturday August 11, 3019 Mweka Gate
We were all
in great spirits when we arose in the chilly air, which quickly gave away to
spring like temps. Behind us, we could see Kilimanjaro startled awake with sunshine
pouring into its glacier-eyes. We had a hearty breakfast while the porters broke
down camp. Everyone wants to get home now! When the porters gathered around in
a circle, this as the customary sign that they would perform some dancing and singing,
and we would hand out tips. Edwin led the spirited songs, with a couple of the
guys really getting into it! One by
one, Mike handed out tips to me, and I shook hands with each and passed their
$40 on. And we packed up and left! This
was all downhill, and the way was muddy and slippery. I again slipped and fell
into the mud, just like I did in 2016! Colobus monkeys chattered above, and the
way was surrounded by lush trees, moss and fertile forests.
It took about
three hours. So, we ended another trip by meeting up at the Mweka Gate, me by
myself, finding Myles, Mike and Shannon together. Ric and Wendie were behind.
We washed off our boots for $1, signed out of the park, and had a Coke! It was delicious!
Not water from my now-stale Camelback. Even though I didn’t summit, I still
shared in the celebration, and Jacob even gave me Stella Point on my
Finally Ric and Wendie showed up. Now we all had a cold beer (Coke for me), and we joked and compared notes. All in all, a great team, great comraderie. And maybe it was meant to be? I already started thinking about a return trip, and Jackson had me thinking of going up the seven-day Rongai instead.
And when I
later checked Facebook, saying that I had quit so close to the summit, everyone
chastised me kindly: I did not quit, I did great… 65+ comments and more coming.
Best of all? We raised a lot of money for Save One Life’s programs and families
in need. And when I jokingly said I need to come back to Kili and redeem
myself—who wants to come? I was only joking.
people already want to sign up. Make it four—count me in. See you again,
Team, Kilimanjaro is the outfitter I have used three times now, and they are superb! I highly recommend them and will use the, again. Thanks to our guides, Jackson, Edwin, Jacob and Prosper, our cook, and all the porters! And my wonderful teammates: Wendie and Ric, Myles, Shannon, Mike, Jim and Sam. And to everyone who donated to support Save One Life!
With the start of the school year comes new teachers, nurses, and caretakers for your child. You may be explaining to many adults what hemophilia is and how they should properly respond if your child has an issue. But, how do you go about teaching your child about their hemophilia? In this excerpt from our latest issue of PEN, we delve into how children understand their bleeding disorders and what you can do to help present information for them to digest.
Teaching Your School-Age Child About Hemophilia
One of the biggest challenges we have as parents of children with hemophilia is teaching our children about their disorder. We often use words like hematoma, factor, and deficiency; and concepts like prophy, coagulation, and heredity. But children understand these words and concepts very differently than adults do.
If you don’t know how your child’s mind works at various stages of his development, then teaching him about hemophilia becomes hit-or-miss. But when you know how he thinks, you can tailor information in a way that he can easily understand. So to teach your child about hemophilia, you need to know how he processes his world in general, and hemophilia concepts in particular.
The School-Age Child’s Thinking Tools
Between ages 7 and 11, the school-age child is in a fascinating stage of cognitive development. “Cognitive” refers to how he thinks, how he processes incoming information about his world—basically, his ability to think logically. Just as he has a skeletal structure that develops as he grows, he also has a mental structure that develops as he matures, filtering information in a way he can grasp.
Your child’s mental structure is characterized by five major thinking tools that are constantly evolving:
Causal thinking: Figuring out when something causes something else, using a step-by-step process. A preschooler doesn’t typically think step-by-step.
Internalized thinking: Moving from understanding his world mainly through his senses—where things happen outside him—to realizing that things can happen inside him.
Gradient thinking: Knowing that the world isn’t just polar opposites, like good guys and bad guys. There are now shades of gray, degrees of intensity. A good guy might do something bad. Your child can also distinguish parts from the whole.
Empathic thinking: Starting to see the world from another’s point of view.
Time: Understanding that he doesn’t exist just in the present, but that he has a past and a future.
For understanding hemophilia, the most important of these five thinking tools may be causal thinking. Your child can now try to figure out how one thing causes another. Like…What causes bleeding? A blood clot? What is genetic transmission? It’s hard to explain these concepts when your child doesn’t understand causality. These are more sophisticated thinking tools than he had as a preschooler, yet a school-age child, ages 7 to 11, is most comfortable using his new thinking tools on things and places he knows best—the tangible, visible world. So let’s see how he uses these thinking tools on various topics in hemophilia, starting with blood.
How He Understands Blood
Unlike a preschooler, your school-age child understands the concept of the whole and its parts. So you can explain blood in terms of what it’s made of. Children between ages 7 and 9 believe that blood is a red liquid, but also that it’s composed of “stuff—water, food and energy.” Children between ages 9 and 11 tend to describe blood in more abstract terms. “It’s cells. Little roundish stuff. They’re red and blue.” A child develops from concrete to more abstract thinking, so this is perfectly acceptable!
Now you can introduce the idea that blood has components: white blood cells, red blood cells, and platelets. While preschoolers focus on things outside the body, mainly what they can see, hear, and feel, a school-age child realizes there are things inside him that he can’t see. So he’s ready to learn about simple blood components, especially those related to his hemophilia.
How He Understands Hemophilia
Because he understands a whole and its parts, your child can now categorize things. A preschooler might describe hemophilia as “blood,” or “something I have,” but a school-age child can classify hemophilia as a “blood disorder,” or “when blood doesn’t stop bleeding.”
He also progresses from describing hemophilia as his own specific injury (“It’s when I get a hurt knee”) to seeing it as a condition (“It’s when someone gets hurt and bleeds a lot”). This is the empathic thinking tool: he knows he is not the only one to have hemophilia. He now says that hemophilia is when “boys with hemophilia have to go to the hospital sometimes.” Compare this to the preschooler reply, “When I have to go to the hospital.”
Your child also has matured from an external to a more internal focus. A preschooler might say, “Hemophilia is bruises,” but a school-age child will say, “My blood doesn’t work right.” What is it that doesn’t work right? Well, he understands the concept of a whole and its parts, and he’s ready to know that blood is composed of parts. So he can deduce that hemophilia means “something’s missing” in his blood. Some children say that they have “lost” something, or that their blood is “too thin.” These answers reflect the “something’s missing” idea. For example, “It’s when you’re missing some factors that help to make it so if you slam your knee against something it doesn’t swell up as much. You’ll have to replace the factor.”
Misconceptions and medical inaccuracies abound as your school-age child struggles to understand hemophilia. “It’s a blood disease. You lose part of your blood and you need to get more blood.” At this stage, what’s important is not so much that his answers are right or wrong, but how he arrives at his interesting conclusions.
So teach your child that hemophilia is a “blood disorder.” Teach him that blood is made up of parts, and that he is “missing” a part. There’s no need to get too specific at first, for example by mentioning factor and proteins; just stick to general concepts and ideas. To help him visualize, use a concrete example, like the falling dominoes. Remember that a school-age child is increasingly able to understand more abstract terms, but he needs the help of concrete examples.
How He Understand Genetics
Learning about heredity is a great way to exercise the “missing step” concept in a step-by-step sequence. To a preschooler, hemophilia is just something he was born with. To a school-age child, something had to happen to cause hemophilia.
What is that something? His parents are usually the missing step. Your child possesses the thinking tool of time, so he may realize that hemophilia could have started in his family many years ago, even centuries ago.
But how exactly does hemophilia get from one person to another? Most school-age children name a causal agent—the thing or event that caused hemophilia to happen. This can be a parent, blood, a chromosome, sperm, or even “vibes,” as one boy phrased it.
Understanding often differs among younger children (ages 7–9) and older children (ages 10–11). When asked how they got hemophilia, younger children may simply reply, “Mom” or “Mom and Dad.” Some children name blood. “It streams through your family, through their blood. I got it when I was two or three. My uncle gave it to me.” This child is medically incorrect, but he’s trying to sort it out logically: a family member had hemophilia, I have hemophilia, and…maybe my uncle gave it to me?
School-age children may also understand or accept some basic heredity rules, such as “mothers are carriers.” This makes sense to them, because a “carrier” is a causal agent.
From ages 9 through 11, a child’s answers and thought processes become more sophisticated. The causal agent may be chromosomes, which only a few children can discuss at this stage. Remember that school-age children are still very concrete—more comfortable with things that they see, hear, feel, and smell. Chromosomes are abstract. Some children identify an “X thing” as the causal agent, but don’t understand the idea in purely scientific terms. To them, X and Y are not parts of the cells. They’re more like “germs” that other family members “catch.” One boy explained, “Mom’s a carrier. She has two little things inside her, little Xs. They’re like little eggs. She has a good X and a bad little X in her. My brother got the good carrier and I got the bad carrier.”
Ask your child, “Where did your hemophilia come from?” and let him figure it out on his own; don’t judge his answer at first or try to answer for him. You can work on the details later, supplying more accurate information once you’ve listened to his explanation and understood his thinking.
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I’m writing from Arusha, Tanzania and tomorrow I start my hike up Mt. Kilimanjaro, the highest free-standing mountain in the world! This will be my third time. I summited in 2011 and 2016—no easy feat! Why, at age 61, do this again? To raise money for our mission—Save One Life. We’ve asked our community to help support our many programs in developing countries and donations are pouring in! Also, my fellow climbers are members of the community who want to experience a world vastly different from their own first-hand, at ground zero. To experience even for a day or two, the lives of the poor with bleeding disorders in a developing country. It is an experience they will never forget. So much so, that two of our climbers climbed with me in 2016 and have returned. And I thought I was the only crazy one!
I want so
much to detail the trip right from the beginning, but there was been zero time
to write or journal. A few hasty Facebook posts is all I could manage. After the
climb, I will share so much more. But first, the most impactful—and unexpected—part
of the trip.
in-country program partner, The Jose Memorial Haemophilia Society, established
thirteen years ago by Maureen Miruka, mother of a child with hemophilia, took
us to visit families in their homes. This idea is what distinguishes us from any
other program in bleeding disorders and we not only insist on this, but we love
it. But Saturday we did something different and new.
to Gertrude’s Hospital, a stunningly beautiful, colorful and peaceful hospital
in Nairobi. With my seven other companions, we attended a Women’s Group at 10
am, and a youth group simultaneously. The six guys took the children and young
men into one room, while Wendie Chad and I, along with Maureen and assistant
Sarah Mwangi, welcomed the women.
stunned as 28 women filtered into the room. And more kept coming over the next
few hours. What was to be a 2-hour meeting stretched to over 4 hours as the
women poured their hearts out. We sat in a big circle, and after a lovely
prayer by Mrs. Mwangi (no relation), we went around the room. The women were a
bit tentative to share. Usually all the attention is on the boys. One mother
started by saying how her husband abandoned the family because he couldn’t deal
with all the hospital stays. Now she has to work, cleaning houses and earning
next to nothing.
optimistically said, “You have to have hope for tomorrow when you find that you
are not the only one.” She lost four family members to untreated bleeds. While
Kenya now has a steady though small supply of factor from the WFH and us, it is
shared how her neighbors shunned her; another, how her own family turned on
her. One mother was accused of witchcraft (yes, this is still a belief in rural
parts of Africa).
mothers and women kept coming in. A mother in a gray shirt shared how her first
child died of a bleed. When her second son showed symptoms of hemophilia, her
physician (at a major hospital!) told her son just needed more protein.
didn’t need to know Swahili to know what they were saying: the pained
expressions on their faces, the gestures to the elbows, knees, ankles as they
spoke. One mother started to share and seconds later broke down in tears and
sank back into her chair.
a rhythm to the conversation: the mothers started out quiet and shy as they
shared. But each shared story empowered them to speak up. But the more they
spoke up, the more emotional they became, and so started carrying, then
reverted to being quiet. This would then encourage another mother to step up
and share, and the rhythm started all over again. It was remarkable!
last summarized the themes as the mothers shared: the need for social support;
family planning; micro businesses (so the women do not have to be so dependent
on men); stigmas of being different; becoming single moms as the husbands left.
powerful moment of the day was yet to come. Maureen presented sanitary kits
provided by a nonprofit in Michigan called Days for Girls. Their motto: “Turning
Periods into Pathways.” The kits were in pretty cloth bags and contained
reusable menstrual pads. Some of the women present were not only mothers of children
with hemophilia, but experienced heavy bleeding themselves. Physicians almost
never diagnose mothers with hemophilia, but if their factor levels are below 50%,
they could have mild hemophilia.
such a stigma around women and bleeding! We all know it, but we forget. I
forget. I listened as woman after woman then shared their bleeding stories, how
ashamed they feel, how isolated. It was so sad. They suffer a double blow of
having a child with a serious medical issue, and then suffering themselves. Just
to have them present and in a safe space where they could share, visibly empowered
them! Maureen showed the contents of the kits and passed around many of them. The
women checked them out and eventually all the kits found a home. The women were
grateful and thrilled.
told us how women in Kenya in villages do not have access to pads often, and
either use rags, or worse: they isolate themselves from their families, and stay
in a corner of their thatched roof, mud hut or concrete home, and simply lie
down and bleed into the sand for days. This is primitive and degrading.
really amazing is my team, in cooperation with the Jose Memorial Haemophilia
Society came up with this great idea and will work in partnership with Days for
Girls to provide more kits and education. I am so proud of them!
ended with tears, smiles, laughter and of course tea! We hauled out suitcases
filled with donated toys to distribute to the children. And before we disbanded
for the day, the women all put a date on the calendar for the next support group