Laurie Kelley

Sending Butterflies to Africa

Laurie Kelley September 1, 2024

I’m writing from Africa! More specifically, from Arusha, Tanzania, the typical launchpad for expeditions up Kilimanjaro. I was also going to hike up it this week, for the fifth time, but things didn’t quite work out for our little team. So instead, we decided to still visit Tanzania and Rwanda. And without all the gear I had to bring, I thought instead I’d bring all the donated materials people have sent for the last four years.

Four years? Yes, because that’s how long it’s been since I have really been traveling for hemophilia. I was in Rwanda four years ago for a workshop in conjunction with the Novo Nordisk Haemophilia Foundation. Together we were trying to help the Rwanda Hemophilia Association, which I helped to found in 2014, create short- and long-term strategies.

Then Covid hit just a month later. And we were house bound for two straight years. Everyone in the hemophilia community knows me as the person to donate unwanted factor and supplies, so these accumulated. First a boxful, then shelves full, then bins, and finally about a quarter of my attic. While I could still ship factor overseas without a problem—its value is enormous relative to its cost by weight—the ancillaries and medical supplies had to wait. It isn’t worth shipping $20 worth of needles at a cost of $100 shipping. So they piled up pretty high!

I collected butterfly needles by the hundreds, syringes, alcohol pads, gauze, tourniquets, and bandages. They were overflowing and I finally had to ask everyone to stop shipping them—I suggested they could donate locally to animal shelters or veterinarian offices.

But with this trip, that changed. There are four of us traveling, and each could take and extra bag. And my boyfriend Doug only needed a carry-on. So that left five big suitcases that we stuffed to the brim with supplies. We even included donated toys and school supplies. And one bag is filled with gear for our guides and porters, as we will be doing a safari. They love getting are slightly used hiking gear and backpacks.

I know everyone who donates enjoys hearing how their donations were put to use. Well, we are dropping off the suitcases at hospitals in Arusha. The hospital staff get the supplies and an almost-new suitcase!

The message? Don’t just throw things away thoughtlessly. I store up zip-lock bags that come with the donations, gift bags, pens, anything that might be of use to someone who lives simply. I take the Styrofoam coolers that we occasionally get and leave them next to local hardware stores with a “Free to a good home!” sign on them. Doug is an avid tennis player and each week he wears out quite a few balls. They look brand new, but are no longer good enough for his games. He used to toss them away! Now he will see what a smile he will get in exchange for tossing them to a child.

Ask yourself: who could benefit from what you no longer need? Consider donating: to Good Will, a homeless shelter, or an animal shelter. In the long run it helps the earth, too.

Thank you—asante sana—to all who have donated and keep donating to us!

Overcoming Depression

Laurie Kelley August 25, 2024

L.A. Aguayo

Overcoming depression and getting out of a rut seems to be major topics in the hemophilia and chronic disorder community. These are topics dear to my heart —I’ve spent years battling myself, my life, my thoughts, and my setbacks.

What helped me overcome depression? The thought if I can overcome it and eventually help other people, then the journey would be worth it. I started this journey ten years ago and the goal was to document how I went through adversity and overcoming depression. What worked? What didn’t work?

Today I want to talk about priming your day for success. I found that having a consistent routine that focuses on positivity, thankfulness, meditating, and envisioning your ideal life can greatly impact the entire day. With continued practice, each day that you win stacks up and creates so much momentum that you start to dig yourself out of the rut. You have to do this while trusting the process and having a long game result in mind. No instant gratification mindset. This is for you. This is for those you love. This is for your reason why. It’s not supposed to be easy or convenient but it’s worth it.

Here are 6 practical tips:

Write down everything you’re grateful for and read them out loud as well. When you write down something, take time to let it sink in. Don’t just skip to the next thing. (For example, if you’re thankful for family, take a few moments to envision and feel what that really is. Paint a picture and memories in your head. Paint the happiest image you can of the future with family.)
Write down who you were in the past and who you aspire to be. What changes need to be made today so that you can get one step closer to being that person.
Have a list of affirmations that you read out loud declaring who you are. Even if you have yet to achieve it, still declare it.
Remind yourself of all the things you have overcome so far in life. Write it down and read it daily.
Understand that happiness is an emotion— not an action or destination. Choose happiness today.
Stop being afraid of your own thoughts. Address them and search for the meaning or the root cause. Then take accountability for your own happiness. Forgive and grow.

And follow my journey as I continue to share advice from the front lines.

L.A. Aguayo has hemophilia, and is a bodybuilder and motivator. He is also author of Adversity =Opportunity: Finding Purpose in the Pain, available on Amazon.

Follow him on Facebook and on other social media platforms.

Hurricanes and Hemophilia

Laurie Kelley August 11, 2024

The bleeding disorder community is great at many things—treatment, research, support and humanitarian aid—but one thing we lack is emergency help during natural disasters in developing countries. On top of lack of treatment, poor infrastructure and a chronic blood disorder, developing countries often have to deal with earthquakes, monsoons, flooding, volcanoes, mudslides, typhoons and hurricanes. I recall when the worst earthquake struck Haiti in 2010, a country I had visited as the first person in our global community, people asked how they could help. Our global hemophilia community had no program that gave such aid, and so no donations were accepted and none were delivered.

On July 1, 2024 Hurricane Beryl became a record-breaker: the earliest category 5 storm on record in the Atlantic basin. Beryl caused catastrophic damage and approximately 64 fatalities in several islands in the Caribbean Sea, resulting in over $6.86 billion dollars in damages.

Beryl hit Grenada’s northern islands and several of Saint Vincent and the Grenadines’ southern islands, such as Union Island. I’ve been to Union Island, and in fact have been to St. Vincent and the Grenadines (SVG) four times over 20 years. Why? Not for holiday. I visit a young man I’ve known since he was small enough to literally sit on my knee, who lives on a remote island called Mayreau.

His mother had called me collect in 2002 and said her two little boys had hemophilia—would I come there and teach her how to infuse? They had no access to factor, and had to travel by speed boat to get anu kind of medical care. With a volunteer nurse from Miami, we traveled by three commercial planes, a charter plane, then a motorboat to get to Mayreau. It is rustic and rugged. We taught the mom how to infuse in one afternoon. Sadly, the mother left the family and island, the youngest boy died of a GI bleed, and Kishroy, the older son, was left with his father to fend for himself. Since 2002, I have been helping Kishroy with factor and funds.

There were eight deaths in SVG from Hurricane Beryl with over $300 million in damages: buildings were battered or destroyed, trees were toppled, and power and communication outages occurred across much of the island chain. On Mayreau Island, over 90% of homes were damaged or destroyed. “Only six homes have roofs,” Kishroy said.

Mayreau is remote, a small island of only 300 people. You can walk the perimeter of it in a couple of hours. Everyone knows everyone there. When I first visited in 2002, the island didn’t even have electricity. There are few trees, so there is little shelter from the wind and waves. It is charming, but poor and isolated. A category 5 storm has decimated it. Kishroy simply said, “I hope I never see anything like that again.”

Kishroy’s home was destroyed. He has suffered so many losses in his 28 years. But he is resilient. I’ve donated money through our Maximum Impact fund so that he can rebuild his home; it’s already underway. And I hope to visit him again soon, to see his rebuilt home, and to bring more factor, more supplies and more hope.

Black Gods

Laurie Kelley August 4, 2024

Race is back in the headlines: at the Olympics and in politics. How about some positive reflections on race and hemophilia?

Our exceptional archivist, Richard Atwood of North Carolina, has found another book that mentions hemophilia. This one was such a surprise to me, as it takes place in Boston, my home base.

Onaje Woodbine grew up in a Roxbury apartment, a predominantly black neighborhood. Onaje lived with both his parents, who were well educated. Still, Onaje grew up in the “streets,” where the way to escape from a poor environment was to become a gangster, rapper, ball player, artist, or student. Due to his natural talent, Onaje chose street basketball.

Source: https://www.bu.edu/bostonia/winter-spring17/onaje-woodbine-street-basketball/

At 17, he was recruited to a prestigious, private high school in New Jersey. Next, he enrolled at Yale University, playing basketball at an All Ivy League level for two years, before resigning from the team after his sophomore year. His resignation letter was published in 2000, in the Yale Daily News. After completing his Yale degree, Onaje enrolled at the Boston University School of Theology to earn his Ph.D. His dissertation research consisted of four years—from 2010 to 2014—of participant-observation for an ethnographic study of street basketball in the black neighborhoods of Roxbury, Dorchester, and Mattapan in Boston. He wrote daily field notes and conducted in-depth interviews with street basketball players, age 18 to 39. Not all of his professors at Boston University approved of his study on the religious dimensions of basketball.

Many street basketball players used the games as “lived religion” to take their minds to another place and time. The games had the patterned behavior of ritualistic and ceremonial components of religion, partially based on the history of the black church and Muscular Christianity from the YMCA that combined religion, health, and sports. While the streets provided the socializing spaces of community centers, street corners, and basketball courts, in additional to schools and churches, activities such as memorial basketball tournaments during the summer provided means to deal with premature death, violence, fatherlessness, illness, poverty and racism.

From age ten, and for the next seven years, Onaje had a constant companion and mentor named Marvin Barros Jr., who was four years older. Marvin was 6 feet 4 inches tall, skinny, and dark skinned. He also happened to have hemophilia. His swollen, painful, and fragile joints prevented him from playing basketball. He had bleeding gums at night. Instead of playing street basketball, Marvin mentored other young black men and focused on art and poetry. Before he died at age 21 due to complications of hemophilia and HIV, Marvin fathered a son named Daeshawn. The Yawkey Club named its teen center for Marvin Barros Jr. as a memorial.

You read about this fascinating mentorship and author in Black Gods of the Asphalt: Religion, Hip-Hop, and Street Basketball, by Onaje X.O. Woodbine (2016). Woodbine lives and teaches philosophy and religion at Phillips Academy in Andover, Massachusetts—right down the road from me. His LinkedIn account also lists that he is Associate Professor at American University.

Know This Superhero in Hemophilia

Laurie Kelley July 28, 2024

This weekend saw a record breaker. Not the heat. Not the Olympics. Not politics. It was the movie Deadpool and Wolverine, which grossed an astounding $205 million for its opening weekend. I confess I adore Deadpool, followed closely by Wolverine. My two favorite superheroes.

Someone on Facebook recently wondered if the newer generation of people with bleeding disorders will remember the superheroes who once broke records during our time: the late 1980s and early 1990s, fighting for justice and compensation from HIV infection in the blood supply. Our world is safer, thanks to them.

Our favorite researcher and archivist from North Carolina, Richard Atwood, shared with me a review of a book by one of our superheroes. Elaine DePrince, someone I met long ago, inspired me with her advocacy and energy. But her personal sacrifices, generosity and compassion reaches new level after reading about this new book, written by Elaine, called Mikey Speaks Out. You’ll see how Elaine welcomed the challenges of raising children with disabilities, even adopting them. The fighting for justice for them, and authoring two books about her experiences. Just incredible.

Richard writes:

Michael-Noah, called Mikey, was the first child born to a 21-year-old mother whose father had hemophilia. Mikey had not only severe hemophilia A, he also was deaf and had a cleft lip and palate. His mother gave Mikey up. He spent months hospitalized for his surgeries and medical issues. Fortunately, there was a hemophilia center located in the hospital. A foster mother in Buffalo, New York sedated Mikey daily with liquid Valium, which slowed his development. When Mikey was eighteen months old, a psychologist diagnosed him with autism, mental retardation, deafness, and blindness.

Charles and Elaine DePrince, from New Jersey, brought Mikey home with them. Elaine was a special education teacher. Mikey now had two older brothers. Mikey acquired a hearing aid, a padded leather helmet, and glasses, all of which were improvements for his senses and protection. At two, he acquired metal leg braces, that allowed him to walk for the first time. He developed bruises from his hemophilia, and began home treatment, rather than having to visit the hospital, for his factor VIII infusions. When he was three, Mikey attended a handicapped pre-school for half-days. Due to poor motor skills, he had trouble using sign language, yet he could read lips quite well. Audiologists could not determine his hearing loss. At age five, Mikey attended a communication handicapped school for two years. His family adopted two younger boys, named Teddy and Cubby, who also had hemophilia A. In 1986, Mikey, not wearing a seat belt, was in a school bus accident. He suffered a severe skull fracture that resulted in partial paralysis, damaged eyes, lost speech, and diabetes insidious.

In 1988, Mikey, Teddy and Cubby all had HIV tests. At age nine, Mikey, who read body cues of an audiologist, left the deaf school after faking some hearing tests. He began home schooling. During a CT test and an audiogram, Mikey was found to be totally deaf due to missing inner ears. His intelligence was not limited; in fact, he was a speed reader. Eventually, Mikey, Teddy and Cubby became sick with AIDS. The Children’s Hospital AIDS Program was 90 miles away. The monetary award from the school bus accident lawsuit helped to purchase an indoor, in-ground swimming pool and an RV. Mikey learned of prejudice, bigotry and hatred from reactions by misinformed adults. Cubby died of AIDS in 1993. The DePrince family helped to feed the homeless in Philadelphia. Mikey acquired measles, and later toxoplasmosis and cytomegalovirus encephalitis, that led to a seizure, a high fever, and eventually his death. Elaine DePrince, his adoptive mother, wrote Cry Bloody Murder (1997) as the legal theory for HIV transmission in hemophilia. At age 51, Elaine enrolled in law school and took part in the wrongful death lawsuits for her adoptive sons. Following Mikey’s wish, Elaine adopted six girls from Africa!

Elaine and Charles had two biological sons and adopted nine children. Sadly, the three adopted sons died of hemophilia and AIDS. Charles died of Parkinson’s disease in 2020. But nothing slowed Elaine down—her newest book is testament to that. To me, she’s a super mom and superhero. I hope our community remembers her.

Order Mikey Speaks Out here.