Laurie Kelley

Rest in Peace, First Lady

Laurie Kelley February 2, 2025

Suzanne Massie, who died a week ago at age 94, will always be our First Lady of hemophilia. Her passing is a significant, inevitable, yet still sorrowful. There’s hole in the world, in our community, where she once was. I fear though, that newer members of our community will not have heard of her, or the important impact she had. I want to ensure she is honored, as she should be. Besides Queen Victoria, who else could be our first lady, the first important mother of a child with hemophilia?

I first talked to Suzanne in May 1992, who was bursting with ideas for the two of us, including getting an official invitation to Russia for me. Hemophilia? Russia? How did all this come about?

It seemed predestined. On Christmas Day, 1986, my mother casually handed me a present she forgot to wrap: Peter the Great, by Pulitzer Prize winner Robert K. Massie. “His son has hemophilia; that’s why he writes about Russian history.” Massie had already published Nicolas and Alexandra, about the last Tsar of Russia whose son had hemophilia. I devoured the book, and Massie became my favorite author. Neither my mother nor I knew at the time I was newly pregnant; nine months later I delivered a beautiful baby—you guessed it, who had hemophilia. Even more weird, knowing it would be a long labor, I brought along my copy of Peter the Great to re-read, complete with yellow highlighter. The nurses teased me: What did I have, an exam the next day?

The next month, at our first clinic meeting, our nurse, Jocelyn, suggest I might like to read Journey, by Robert K. and Suzanne Massie. She asked if I knew Bob Massie, and I said yes, Peter the Great was my favorite book. And she said no, I meant the son, Bob. Of course I had never met him. It turned out he lived two miles from my house.

I then read Journey, which I believe is the first real book about hemophilia. It chronicled their life, and the birth of their son Bob who was born in 1958. I was in tears by page 11 and couldn’t read any further. Then unbelievably, Bob actually called me one frigid night in January 1988. He was the first person with him hemophilia I ever talked to in my life. He was so kind, so relaxed, and completely put my mind at ease. I was a new mom, with a lot of stress and debt, and a new baby with this obscure disorder. Bob, it would turn out, was just as amazing and kind as his mother.

Eventually I was able to meet his mother. I think I offered to use my database for my newsletter PEN to reach out to families with hemophilia to collect clothing and toys for Christmas for children in Saint Petersburg, Russia. Even I didn’t know the extent to which Suzanne Massie was so important. With the couple’s focus on Russian history, and Suzanne’s involvement in Russia, she actually became President Ronald Reagan’s adviser on Russia. You may have heard the phrase “Trust but verify.” This comes from a famous Russian phrase Doveryai, no proveryai. Suzanne offered the phrase to Reagan when dealing with Russians. Reagan like the phrase so much, it became a White House policy.

Our efforts worked: we received 800 lbs of clothing and toys for the kids in Saint Petersburg, All gifts from the US hemophilia community. I remember Suzanne visited me at the warehouse, where the boxes ended up, and turned and looked at me, still a young mom, and said “Look how much power you have.” I believe she felt proud of me. And Suzanne, who was 61 at the time, and I spent about four hours in that very cold U-Haul warehouse sorting and packaging up clothing and toys. I marveled at her drive, energy, and stamina. Yes, she became my hero.

Suzanne, surrounded by the St. Petersburg, Russia, children who received the gifts we collected

We spent more time together. In March 1993 I went to Suzanne’s house in Boston for our interview for my newsletter PEN. I recall how deeply she expressed love for the children. with hemophilia in Russia–who at that time had no access to factor.

In May 1993, I visited at her house again and we watched a 70-minute Russian documentary of her life. The Russians loved her. She had founded a nonprofit called the Firebird Foundation, which helped children with hemophilia in the Saint Petersburg area.

I also got to know Bob better, especially in September 1993, when we hosted him and his wife for dinner at our small home in Medford, as he discussed plans to run for Lt. Governor of Massachusetts. This family was amazing!

In 1997, I visited Russia for the first time, and in Saint Petersburg, I was able to meet Elyena, the nurse in whom Suzanne had entrusted the Firebird Foundation. Suzanne later asked me about the trip and asked, didn’t you feel like home when you arrived in Russia? Her love for that country was immeasurable.

Time went by, and with three children I was very busy. By then I had my business, and also had started Save One Life, a nonprofit dedicated to children with hemophilia in developing countries. We had a major fundraiser approaching in 2012, and it was my chance to dedicate the gala to Suzanne. We would honor her for her work for children in Russia and for being such an inspiration to all of us. I decided first to visit her in Maine where she lived now. It was a four and a half hour ride each way, in one day. But it was so well worth it. Suzanne was of course older, slowed down a bit, caring for her husband, but was in the process of writing a book about her years with Reagan. Of course she was!

Bob and his family, and also Bob’s sister Susanna, who I had met quite a few years before, and who has two sons with hemophilia, and all their children arrived for the gala held in Massachusetts. It was a wonderful event with a huge turnout. Suzanne is a great speaker, so knowledgeable, and yet connects with everybody. At the end of the event both she and her son Bob signed their books (Bob had a newly published book, A Song in the Night). And still, I felt that I could never do enough to praise this amazing woman who made such an impression on me, and gave me the confidence to continue my work, especially internationally. I could never fill her boots or take her place, but she was a constant inspiration in my life to help me fulfill my mission.

I read online that in 2021 she was awarded Russian citizenship. What a fitting tribute to such a dedicated woman. I will never forget her, and I have all her books in my library. I hope this generation of mothers can look to her for inspiration as well. Read her books; learn about her life. She’s living proof that one person can impact a global community.

Massie, Suzanne, Trust but Verify: Reagan, Russia and Me, Maine Authors Publishing, 2013: Paperback and Hardcover.
Massie, Suzanne, Land of the Firebird: The Beauty of Old Russia, Simon & Schuster 1980: Paperback; Touchstone 1982.
Massie, Suzanne, Pavlovsk: The Life of a Russian Palace, Little Brown & Co. 1990: Paperback; HeartTree Press 1999.
Massie, Suzanne, The Living Mirror, Doubleday & Co. Garden City New York 1972: Paperback: Anchor 1972.
Massie, Suzanne & Robert Massie, Journey, Alfred A. Knopf, New York 1975: Paperback: Warner’s 1976; Ballantine Books 1984.

History and Politics… and Hemophilia

Laurie Kelley January 19, 2025

Hemophilia is a rare disorder, but it has one of the most notorious histories in the world, as far as disorders and diseases go. What is comparable? The thalidomide disaster of the late 1950s and early 1960s. The drug thalidomide was given to pregnant mothers to ease their morning sickness, and ended up causing horrific birth defects. It was banned in 1961. It was the medical establishment endorsed by the political establishment… sound familiar? Even more eerie, about 10,000 babies were affected worldwide. The same number as affected by the HIV scandal of the 1970s and 1980s in the US. (Watch a good documentary about this here)

A close second could arguably be the recent pandemic. Only this time the political establishment interfered with the medical establishment in putting guardrails in place. The World Health Organization estimates about three million died of Covid.

I was thinking of how the first two tragedies spurred their respective communities to action politically. Our hemophilia community led the charge, and forced political changes that made blood donations and our nation’s blood supply safer. As we approach a new political era, we need to remember and study history, and monitor political winds of change. They could be drastic.

I was thinking of all this yes, due to the upcoming change in presidents, but also as I was listening to music videos on YouTube. While seeking out new music to put on my iPod (I still use one) I came across this one—“Gone Too Soon.” I’m not a huge Michael Jackson fan—although I loved MJ The Musical—but never even knew that he made a song and video for Ryan White. Think of Ryan as our ambassador of Hemophilia and HIV. He was the face and name that represented thousands. A brave young man and a stoic and determined mother.

I feel badly that I didn’t know about this video and song. I’ve watched the movies and read a lot about this era. But I wonder, with all the new moms and dads joining the Facebook groups recently, do they know who Ryan White is? What the Hemophilia Holocaust is?

If they don’t, we need to remind them. Like our current politics, we need to be involved. And that means knowing our past, so we can determine our future.

Netflix offers The Ryan White Story—a must see for parents of and patients with hemophilia.

Be a Goalie!

Laurie Kelley January 12, 2025

It’s pretty typical that we think of the new year as a time to set new goals for the coming months. It’s not a bad idea! We seem to think of January as the beginning of new plans, new opportunities, a new start. By March, some of those plans fizzle out. By July, we give up and wait for next year. Ever happen to you?

What makes us give up? What makes some people stick with their goals and succeed?

Goals are concrete targets, measurable and incremental. They build a visible step-by-step path to success. But you can’t build that path until you have a vision of what you want to achieve. Think hard first about what it is you want to achieve. For most people, it seems that a healthier lifestyle is tops for goal-setting. Let’s use that as an example. Rather than set a goal as “I want to get fit,” instead, say “I want to walk 10,000 steps daily.” And you can easily visualize yourself getting up each morning early, and walking two miles, which will give you almost half that goal already.

Once you’ve decided on a goal, set an objective. Goals are composed of objectives, which are manageable, sequenced, and measurable tasks. Objectives spell out what must be done, in what order and by what date, to reach a particular goal. Objectives for our walking goal? Buy appropriate footwear. Be cleared by a physician. Decide on a route.

Make sure your goal is written somewhere where people can see it. This will hold you accountable. Post in your house or on social media. Ask friends to join in.

Even writing goals and objectives isn’t enough. Goals must be worded in a way that makes them effective. Effective goals are exciting because they create energy and momentum, and are achievable. They compel us to act now. So your goal might be “Walk 10,000 steps a day while listening to audiobooks,” a way to achieve two goals at once!

Finally, be sure to reward yourself for milestones. Yes, you’ve walked 10,000 steps every day the first week. That’s 70,000 steps! Give yourself some reward for achieving a milestone, like 100,000 steps. But not something that will defeat the ultimate goal of getting healthier. No alcohol or chocolate! Trying buying a new book… perhaps on goal setting!

Happy New Year!

Laurie Kelley January 5, 2025

Kuvarsing Pawara: New Leg, New Life!

Laurie Kelley December 29, 2024

We often count our blessings at the holiday time of year. Sometimes it takes a reminder to know how fortunate we are to live in the US, even during troubled times.

I traveled in India for one week this month, primarily to visit the Christian Medical College (CMC) Vellore, where they specialize in caring for people with hemophilia. World renowned, we trust them and offer our support for surgeries for the poor. To date we have provided surgery or prosthetics for about a dozen patients. One of these is Kuvarsing.

I learned from our wonderful colleague and friend Usha Parthasarathy that this 25-year-old with hemophilia B has an inhibitor, making his life in poverty doubly difficult. He lives in Ramapur village, Maharashtra. His family works “in the field,” and he has two brothers and a sister.

He was undiagnosed for years. One day he developed swollen knees and severe pain in one knee. Despite the pain, Kuvar took his school exams. The control the boys have over pain is astounding. After the exam, he attended a health camp where he was informed that blood had accumulated in his knee and surgery was required. He underwent surgery and doctors applied bandages to his knee for three months. After the bandages were removed, swelling persisted. Further complications led him to the health camp for another surgery, during which more bleeding occurred.

Doctors referred him to King Edward Medical (KEM) Hospital in Mumbai, where it was diagnosed that Kuvar suffers from hemophilia B. From 2019 to 2020, despite health setbacks, Kuvar enrolled in a Bachelor of Arts program and successfully completed the first and second semesters!

Unfortunately a pseudotumor—almost unheard of in the US—developed in his knee. He tested positive for an inhibitor. The medical team at KEM hospital did their best to save his limb, but the high infection rate of the pseudotumor eventually led to amputation. The national group Hemophilia Federation (India) provided factor. The medical team at KEM wanted to provide him with a prosthetic leg for which he needed monetary support. But Kuvar would need to pay for this himself. Due to Kuvar’s low economic background, the financial burden has placed him in a difficult situation.

When we heard about this, we acted. Kuvar now has a new leg… and a new life. A great way to start 2025!