Laurie Kelley

We’re Giving Away to Celebrate the Day!

World Hemophilia Day, that is, in rhyming fashion! To celebrate, we are giving away copies of the first children’s storybook on hemophilia, Must You Always be a Boy? I created it over 30 years ago for my child with hemophilia when I realized there were no books for our children. I guess now it’s a “classic”!

Told in rhyming fashion, Dr. Seuss-style, the book contains four humorous and endearing stories for children to help them cope with hemophilia. The first is about over-reactive adults (namely, a well-meaning police officer!). The second, about a very active little boy! The third, about sibling rivalry; and the fourth—and my favorite—about a little monster who is bullied, but comes to realize he is stronger than he thinks.

The books are all based on real people (except for the monsters!).

The book has always been free, but for the first 50 people who email me, there is free shipping in April.

So email me today! And celebrate the day! (It rhymes!). laurie@kelleycom.com.

Island of Dreams

Twalzan Beach, Mayreau Island

I had forgotten just how beautiful are the waters of the Caribbean. Flying overhead, from Bridgetown (Barbados) to Union Island (St. Vincent and the Grenadines), even the prolific and troublesome brown sargassum, which spread like a brown sea-snake for miles and miles in the turquoise-jeweled sea, could not stop my awe of this place of paradise.

This was my third trip in 22 years to the island of Mayreau, to visit Kishroy Forde, a young man with hemophilia. I first visited in 2001, when Kishroy was only 6, at the bequest of his mother. She had called me collect, after a tourist gave her a copy of my book, Raising a Child with Hemophilia. The tourist was a nurse, and Kishroy’s mom had told her she had two children with hemophilia. My number was in the book, and Kishroy’s mom called and begged—no, demanded— that I come and teach her how to infuse her son. At once I loved her attitude and agreed.

Kishroy, Laurie and Officer Owen

I convinced a nurse from Miami to accompany me, and together we took several flights and then a very low-in-the-water wooden outboard boat to the remote island of Mayreau. At that time it had no electricity, government, or medical care. My nurse friend taught Kishroy’s mother in one afternoon how to prepare and infuse factor while I took the children—Kishroy, his four-year-old brother Kishren and their two half-sisters—to the beach to keep them busy. When we returned, Kishroy received his first ever infusion of factor, which I had brough with me. I shipped them from time to time with factor.

A lot happened in the intervening years. Despite our donations of factor, little Kishren died of a GI bleed. Because on Mayreau, nothing happens fast. To get to a hospital, you have to find someone with a boat willing to take you there. And it’s a 30-minute, bumpy ride over choppy waves. The main hospital staff did not know much about hemophilia in those days. After his death, the mother left the family and moved to another island, leaving behind Kishroy, 11, now without his brother or mother. And last year, his best friend, and cousin, Tevin died, age 25, of a brain bleed in his sleep. This one hurt Kishroy the most.

Luckily, Kishroy has an exceptional father, Adolphus, who was a fisherman at the time. And an island full of relatives. I returned in 2014, to see the little boy I knew had grown to a young man now 6’3” tall! I stayed only for a couple of days, enough to give him more factor, some gifts and to see how he was. The island now had electricity, and a nurse who visited once a week.

Then, Save One Life stepped in to help. Kishroy received a sponsor: first, the Castaldo family of Illinois; then, John Parler of Florida. Both families have children with hemophilia. Kishroy also received a scholarship to attend post-high school training. He learned how to repair computers, and studied electrical engineering. This would alter his life.

I continued to donate factor when needed. Kishroy would call, text or WhatsApp me to request what he needed. I was impressed that he never asked for anything more than what he needed.

Mayreau Medical Center… and post office

The day finally came when I could get away post-Covid and return to see him. So I spent last week with Kishroy, now 28. I arrived by boat again, and he was on the dock to greet me. This time I was amazed at his growth—not in height, but in maturity. The little boy I knew has become a man, who still lives in a tiny island of only 450 people, but who has big dreams. In fact, Mayreau now seems to be a place of big dreams.

It’s hard to overestimate how strange it is to live on such a small island your entire life. I doubt Kishroy has ever been to a movie theater. He grew up with a house with a rain vat to collect fresh water, an outhouse, and no electricity until 2007. He is surrounded by family and neighbors, and knows every inch of the island. To go anywhere requires a boat. The sunsets are spectacular, the people unhurried and kind, the vibe very cool and serene. Crime? “Sometimes someone will have too much to drink and will need to be escorted home,” Kishroy shared. There are only three policemen on the island, and one is—of course—Kishroy’s cousin Owen. I joked to Kishroy that I would just assume that everyone we met was his cousin.

How do you dream and plan, when your life is so literally limited? And you have suffered not only such losses, but have a life-threatening blood disorder and no medical facility to help?

The new hardware store in progress

Kishroy may be one of the most self-reliant people you could meet. He not only can fix just about anything electrical, he can repair out board motors, knows plumbing, and does construction. His computer skills got him a job as Director of Operations for a new tourist spot on the island, in a location perfect for kite-surfing, which is huge here.

In addition, he is transforming a donated two-room dwelling near the main beach into a hardware store. He came up with a brilliant idea. Seeing the multi-millionaire yachts and catamarans that arrive each week for a quick stop, knowing the fishing industry and need for properly functioning outboard motors, Kishroy noticed that every time someone needed a repair, they had to plan a trip all the way to Union Island or the St. Vincent mainland. Time-consuming and aggravating. He realized that Mayreau needed its own hardware store. He began clearing out the dwelling and installing shelves, and hopes to open this year, and turn a profit in a few months.

See all the photos here

It would be easy for Kishroy to succumb to despair and depression over his losses and suffering, but he never complains. He turns hardship into action; difficulties into dreams; dreams into reality. He may live out his life on this small island, but he will be king of it. It’s quite a metaphor for those of us in America, who might think we have it tough. We have no idea. It takes a visit to Mayreau to put it into perspective. Dreams matter and dreams make the difference.

I left Kishroy with enough factor for about six months, thanks to all the donations we have recently received. He left me feeling incredibly proud of the man he has become, and humbled by his positive attitude and strength. I cannot wait to return—next year. Read the 2014 visit here.

Laurie and Kishroy in 2023, same spot!
Laurie with Kishroy (L) and Kishren (R) in 2001

Operation Shake Down

No lingerie, just butterflies

I must have been watching too much Border Patrol on YouTube, a TV show that highlights detainments and inspections of tourists into Australia. It’s really fascinating how they profile people through body language, looking for certain tell-tale signs of nervousness. Australia is tough on controlling substances it allows into the country to protect its fragile agriculture. And to stop the flow of drugs from countries in Asia. And to stop people from entering trying to find work illegally.

It got me thinking, for once in 27 years, that I should declare “pharmaceuticals” on my customs form when I enter a country. Often when I travel to a country where there are known and trusted hemophilia patients, I try to bring some factor.

On this trip, I’m visiting two islands: one does not provide any factor at all for its patients, and one does, but not enough. I brought about $200,000 worth for one country, and about $50,000 worth for another.

And due to what I checked off on the customs form, I got flagged. In the 27 years I’ve been bringing in factor, I’ve been stopped a handful of times only: Pakistan, Russia, Argentina, Jamaica, Haiti. Most customs agents are sympathetic when I say it’s for bleeding disorder patients, and that their country does not buy the needed drugs, and that mine are donations.

But only twice have I ever been “shaken down” for money to allow the product through. This means not legally—as in I’d be fined by the government—but money to go into the customs agent’s pocket. I would never give a bribe for donated factor.

And this customs (I’m not saying which country) is basically a wooden box with a rubber stamp and a bored official with no visitors and too much time on his hand.

“Let me see the product,” he asked. And I opened my suitcase, which also held: a teddy bear, stuffed animals, lots of packages of crayons, some toys, a red ball. “For the kids on the island,” I offered. And lots of factor in a Victoria Secrets’ bag.

I explained about the drug, who it was for, what it meant, but he replied, “Everything has a value. How much is it worth to you?”

I knew immediately what he was saying, but played dumb. “It’s worth nothing. It can only be used by the patients with hemophilia.”

A little stand off ensued, with him posturing, maybe expecting a woman would be afraid of him, and me… smiling.

Just like the shake down several years ago, different country, he waved me through. And our patients with hemophilia are getting their donated medicine.

Barbados… Holding

The bustling airport, the long lines, new hotels popping up… all speak to a brisk tourism that provides the tiny island nation of Barbados with a staggering 17.5% of its $4.8 billion GDP. But hemophilia remains a quiet part of this country of 281,000.

Laurie with the members of the Barbados Haemophilia Association

I last visited in 2014, when I had already made contact with Sofia, a young mother there in need of factor. I sent her some and in turn, with a bit of guidance, she was kind enough and motivated to start the Barbados Haemophilia Association, which continues this day. She has since left the island to raise her child in the United States, and Erica Worrell, another mother, took over as president.

It’s not easy. And like many businesses, nonprofits and lives in general, momentum was cut short by the pandemic. This was my first real country visit for hemophilia-related purposes, since the pandemic. I last saw Erica on the streets of Glasgow, Scotland in 2018, following the World Federation of Hemophilia Congress, as we were both window shopping. I looked forward to hearing how things were going; what were the factor needs; what were next steps?

After a lovely luncheon I hosted today for some of the families, I can see that hemophilia in Barbados seems in a holding pattern.

There is much potential. It’s a small island; only 33 patients known patients, with quite a few related. The government even buys some factor. They have a powerhouse of a nurse in Virginia, who knows everyone and knows hemophilia.

Unfortunately, the ERs do not. Despite the BHA’s best efforts, Jeffrey, a man with hemophilia B who I met the last visit, said, “I’m scared to go to the hospital.” Apparently the ER staff, as in many developing countries, do not place hemophilia as a priority (if they can’t see the bleed), and do not listen to the urgent requests of the patients or parents.

Erica Worrell, president of BHA

They also have problems with racial divides, believe it or not. There is a parish (like a county) called St. John’s, where descendants of the Scottish and Irish indentured servants or forced laborers who once landed here hundreds of years ago settled. They tent to keep to themselves. There are hemophilia patients there, but not much is known about them.

Access to factor is good, when it is available. What is provided by the government and by the WFH is typically not enough to meet needs. Though it certainly is much better since I visited in 2014! Erica and the BHA are well connected now to the WFH, which was one goal of forming the BHA.

Jeffrey was one of 11 children growing up in the 60s. One brother also has hemophilia. His nephew, Leemar, and I are good friends now on Facebook messenger, and he lets me know when he needs factor (FEIBA or NovoSeven). A great-nephew, Konnor, was also there, a rising star! He has big dreams to become a hematologist, and something tells me he is going to succeed.

Laurie with Leemar

At least things are completely better than when Jeffrey was young. He tells me mischievously that as one of 11 children, “They couldn’t keep on eye on me so much!” He is famous as a teen for cliff diving… without factor! He describes the pain he endured as a “monster. You could feel it creeping up on you, thump, thump, as the knee got bigger and bigger.” The pain was excruciating, but Jeffrey tried to be stoic. Life was measured second by second then.

Thankfully now, because of the combined efforts of the BHA, WFH, and the dynamic nurse Virginia, a new generation has a chance. Barbados seems a bit paused, but it is starting to rise again, like the rest of the post-pandemic world. Erica already has a new idea for a comic-book style publication about the Jeffrey’s story, Leemar’s story… everyone’s. It’s a great idea, so long as they leave our Jeffrey’s cliff-diving escapades!

We parted as good friends, and they dispersed with the bundle of factor and medical supplies I brought. I’ll be back next year, with more factor, supplies and hoping to see activities and a new comic book!

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