As I drove out to visit my mother today on Mother’s Day, I thought of all the mothers in hemophilia who made history or made their mark. Some were famous, some not so much. Many made differences that impact all of us today. I realized, too, an important distinction: mothers were so prominent and made such a difference due to the HIV crises in the 1980s. And afterwards, when we lost almost half our community, mothers stepped forward to make changes. They had to; many of the men, especially the activists, were gone. And their children were too young to take action.
But let’s start with one famous woman from history: Queen Victoria. She is perhaps the most notorious carrier of hemophilia, as well as being the longest serving monarch in history, that is, until Queen Elizabeth just usurped that title! Queen Victoria had nine children; only Leopold had hemophilia B. But two of her daughters, Princess Alice and Princess Beatrice, inherited the gene, which they passed on to the Russian royal family and the Spanish royal family. Prince Leopold died on March 29, 1884 in Cannes, France. Princess Alice married Tsar Nicholas II and later gave birth to Alexis, who had hemophilia. And that changed world history.
In the US? I think of Jeanne White-Ginder, whose son Ryan White challenged not only the Indiana school system to allow him to stay in school despite having HIV, but challenged the nation’s mindset and fears. To a nation that feared homosexuals and heroin users as HIV contaminants, Ryan was just a little boy, who gave the dreaded virus a face and name. He died on April 8, 1990, and his mother continues his cause to educate everyone about HIV, health and advocacy. (I am honored beyond words to be friends with her on Facebook)
I also think of Louise Ray, mother of the three brothers: Ricky, Robert and Randy. The Ray family made headlines in August 1987 (a week before my own son with hemophilia was born) when their trailer home in Arcadia, Florida was fire-bombed a week after the boys were granted permission to attend school despite having HIV. The Ray family had sued the school district and won re-admittance to school, as well as a $1.1 million settlement. They were ostracized from the community and even their own church. The faced death threats. Louise was only 29 years old. Ricky Ray died in 1992 at age 15. Robert died in 2000 at age 22. Eventually, Congress would pass the Ricky Ray Act which provided compensation to everyone with hemophilia infected with HIV, as part of the government settlement for not safeguarding the nation’s blood supply.
And I bet you don’t remember that we once had a female president of NHF! Kate Muir, the one and only female president. That was a daring role to take on, and maybe it’s time we think about another woman to lead us?
There’s Michelle Rice, mother of two adults with hemophilia, former executive director of the Indiana Hemophilia Foundation and now senior vice president, External Affairs, National Hemophilia Foundation–and recognized insurance guru! And Dawn Rotellini, senior vice president, Program Development, mother of a child with hemophilia. Two powerhouse women who continue to influence chapters and leaders in the US and beyond.
Lastly, Kimberly Haugstad, executive director of Hemophilia Federation of America, a national nonprofit that advocates and educates and offers programs to directly impact individual families with chronic disorders. Kimberly works tirelessly to reach families in need through financial assistance, education and policy-making. She’s the mother of a child with hemophilia.
To these mothers, and so many more, Happy Mother’s Day and thank you!
It sounds cliché, but there truly are people you meet only once in your life but never forget. Aurora was such a person. My dear friend and colleague Adriana Henderson, founder of S.T.A.R. Children Relief, told me yesterday that this 68-year-old Romanian woman had died. It felt like a star had fallen from the sky into blackness. What do I remember about her?
I met her in April 2004 in Romania, my first trip there. I’ll share from my journal at that time:
“Adriana and I had had several days visiting hospitals and patients, and went on to the city of Isai. We finally arrive at Aurora’s house, late, after 10 pm, tired and stiff. Aurora is a nurse at the local hospital who treats hemophilia patients. She is Adriana’s partner here in Romania, a person whom she trusts completely, with money, with tasks, with confidences. She is a stocky, short, unadorned woman. Her hands are swollen, more from hard work than her weight. Her gray hair is carelessly put in a bun, with escaped whisps loose about her face. She is cross-eyed. She is very gracious. Despite how late it was she had a lovely meal prepared, which she completely cooked herself. With a sly smile she insists that we try her wine, which I wonder is homemade since everything is, and the wine is in a Fanta bottle. Aurora toasts “Christ is Risen,” I answer “Amen,” and we finish our meal. It’s obvious she and Aurora have deep affection for each other. Finally, over a small country bridge, we drive on to the Monastery at 11:30 pm, which is just down the road from Aurora’s house. We awaken one of the nuns and get settled. Aurora had accompanied us to help us get settled, then insists on walking home in the dark, chilled night.
“In the morning we set off to get Aurora, who’s fixed us an amazing breakfast. Homemade strawberry jam, homemade butter, sour cream, eggs fixed with sausages, home made breads. We marvel at her abilities as we learn that neither Adriana nor I cook or enjoy cooking. We are happy to have something so deficient in common! We eat a lot, and it will be our only meal until 10 pm. Aurora now comes with us on our visits. We next visit Marius’ house. Marius has abscessed teeth, and needs to have them pulled. We gave him the 8,000 units we had, a vast fortune for someone with hemophilia here, an amount many would never see in a brief lifetime; a one week’s supply for a typical American boy.
“Next we venture on to Jonas’s [not real name] house. It’s only 20 minutes away. Both Marius and Jonas are Aurora’s patients and under her care. I expect a small home, like the others we have seen, but I am not prepared for his home. He lives in a one-room shack with his four siblings and grandmother. One bed, on which they all sleep, one well from which they retrieve water, one outhouse, next to where the beefy pig is penned. As we come in the grandmother grabs and hugs and kisses me, as if I am here to rescue them. Jonas exists the house, on homemade crutches that cause him to bend over. He looks tough, roughened. He does not smile, and eyes us guardedly. He is 14 years old, thin, with a permanent joint contracture. He has an older sister who is working, a younger sister, 13, who is beautiful, and twin brother and sister. They are both blond haired and green-eyed, absolutely beautiful. At first they are all wide-eyed, and not trusting. Adriana presents them with presents: an Etch-a-Sketch and a doll. The children recite some poems and songs for us, which we recorded. Little by little Jonas warms up.
“His story? His mother is an alcoholic, the father has deserted them. The mother shacks up with a new boyfriend, leaving the grandmother to care for the children. The grandmother is a saint; she had those four children looking as clean as could be, with hair combed and clean clothes on. That seems almost impossible given where they live, They do not have running water or anyplace to bathe. The mother refuses to let Jonas attend school, even though the beautiful school is right next to his home! He could walk over, even with his disability. She refused to let him go to summer camp. She has a million excuses. She beats the children, but it was worse when the father was home. The father would beat all the children, including those angelic twins. When the grandmother fell ill and was in the hospital, the twins would not leave her side, preferring to sleep on the hospital floor rather than go home to a place where they would be unprotected.
“Adriana offers again to send Jonas to a boarding school in town, but Jonas drops his eyes and vigorously shakes his head. Why? Adriana asks. Don’t you want to learn how to write? To study? To get a job? His lip quivers and he bites it. Looking down he answers, not if it means leaving my brother and sisters. He wants to stay to protect them. The grandmother and Adriana get tears in their eyes. What a stoic child.
“What do you want to be when you grow up, I ask him. The thing I can never be, he replies, a policeman. Aurora suggests he might work in the police department, and then get top lock up bad guys; his face lightens a bit.
“The visit takes a twist when the mother shows up, stumbling down the street from the town center. She is drunk, and her lover is with her, a thin, weasely-looking guy, dirty and also drunk. We shrink back as if we’ve seen two poisonous snakes. Not Aurora. Usually quiet, unassuming, she suddenly leaps into action, and verbally attacks the mother. Why don’t you let this child attend school? Why won’t you let him attend camp? The mother is smoking and tough looking. Little by little she cannot hold up under the barrage and starts to cry. The children are all watching. I know it is not a pleasant scene, but I hope they see how Aurora fights for them. We’re standing out on the road and neighbors start to gather. The mother earns social security for each child, $10 a month. It’s in her interest to keep the child home and disabled. The welfare money makes her wealthy: she could actually live better than Aurora. But instead she is the town’s poorest person, and drinks her money away. We leave disgusted and angry, vowing to change this child’s life.
“We then drive on to Suceava to meet gypsies with hemophilia [which is a story for another day!]. The day was long and poor Aurora was exhausted. Aurora is a person I imagine not given to asking anything for herself or complaining, yet she kept checking her watch, yawning and looking tired. She has to get up a 4 am, ride 5 hours each day to get to work, and tomorrow must work a double shift.
“April 20, 2004: I awoke at 6:15 this morning at the monastery. It was very cold, with frost on the ground and a chill in air. We had to scrap frost off the car windows, serenaded by a very hungry young cat, who was chased away by one of the farm hands, until Mother Superior let him purr his way into the kitchen. The monastery grounds were quiet and still in cold air. We set off to pick up Aurora. We talked her into letting us drive her to work, so she can get there in 20 minutes, instead of taking the train for 90 minutes. Her 95-year-old father is already up and dressed, bright eyed, saying good morning to us in slow motion. Aurora has been up since 3:30 am, yet has set out a full breakfast, with fresh chicken legs, home made breads, pickled peppers, butter, jam, and tea. She insists we eat. We give her some money for Jonas, and for some other patients. She accepts it without question and stores it in a safe place. I wonder if she thinks I am crazy for parting with this fortune. She earns only $150 a month, but accepts $215 for these destitute people. We trust her completely. We set off to drive her to her hospital where she’ll work two shifts, back to back, helping other people’s kids and worrying about her elderly father all day.
“When we drop her off she has red-rimmed eyes, brimming with tears. She is rambling on and on in Romanian, speaking to me; we are holding hands, hers feel like leathery mitts. I find it hard to let go of her. She is plain, age 53 and looking older than she is, with grey hair and crossed eyes. But how special she is, how selfless. She cares deeply and genuinely for everyone. I can’t think of anyone else who lives Jesus’s message more. I tell her she loves these boys with hemophilia, and she would love my own son if he were one of them, so how can I not love her? Her red-rimmed eyes blink and she shakes her head as if to deny it. I tell her she is an angel on earth and she shakes her head even more vigorously. As we drive off, I look out the back window; she is standing in the street, and we are both waving to each other for as long as we can, until we no longer see each other. It’s not the cheerful waving of goodwill when you leave associates; it’s the forlorn waving to someone you genuinely like when you are not sure when you will see them again. It’s tinged with surprise at these sudden feelings, melancholy, love and fear, fear that you don’t know when you will see each other.”
I only met Aurora that once, and we spent a few days visiting patients together in some odd situations. Enough time to know her heart, and see her fierce love for the children who suffer in action. She had no children of her own, and cared for her elderly father. Who would ever care for her? She is at rest now; a life well-lived, in the service of the poor and suffering. Her name means “Dawn,” and the dawn always gives us hope . The way she always gave hope to the children with hemophilia in Romania.
That’s the name (sort of) of a Judy Garland song from the movie “Easter Parade.” And I went back to Michigan this past weekend, for the annual Springfest! The Michigan Hemophilia Foundation invited me to attend the showing of “Bombardier Blood” on Friday night. As I walked the long Marriott hallway to the conference room, I saw the stunning visual timeline, created by Shair Luckey, and realized that Ypsilanti, Michigan was also my first professional appearance in the hemophilia community, in 1991, six months after my book Raising a Child with Hemophilia was published (and my second child was born). How incredible was that! I promptly add my sticker to the wall on 1991, to become part of this rich history.
And the Hemophilia Foundation of Michigan has secured its place in history: it was the first hemophilia organization in the world to have a summer camp, Camp Bold Eagle! How about that for vision?
The movie was great–again! The audience was enthralled, and afterward we had a Q&A all about Save One Life. Of all the comments I made, the one that seemed to stick was the one about family life in developing countries. How strong families often seemed because of survival. There is typically no social welfare, no nursing homes; so family is all you have for a safety net. The eldest son is usually responsible for the survival of the family, and when that child has hemophilia, the entire survival of the family is cast into doubt. Save One Life, in helping one child, can then save an entire family. In the US, we are so used to being independent, that this concept seems rather foreign to us. So it was a revelation and I was asked about it again and again the next day.
On Saturday, Pat Torrey gave a lively and inspiring talk about finding your passion and dreams. Rick Starks gave Tai Chi demonstrations and classes. Dr. Steven Pipe, chair of NHF’s MASAC, gave his talk “Shifting Paradigms,” which I’ve known seen for the second time. Absolutely fantastic; all about understanding current therapies, new therapies and coming therapies. He is gifted in being able to explain very abstract and difficult scientific concepts into simpler terms, using analogies like Amazon.com and eHarmony! The audience rippled with laughter when Pipe described Hemlibra as being the “eHarmony” of hemophilia, bringing factor IX and factor X together to mimic factor VIII, and thus clot the blood. Who would have thought of blood clotting as a love story? The audience sat still and attentive for an hour, completely immersed in this great presentation.
And the positive talk continues about gene therapy. Present at the booths were Spark and uniQure, two companies with gene therapy in clinical trials. Exciting times ahead!
I was just content to reconnect with so many friends who I often do not have much time to speak with: Deena Maki, Vaughn Ripley, Rick Starks, Suzan Higgins, Dave Luckey. Great people doing great things. We are a community of true superheroes!
A special request and letter to the hemophilia B community!
As you may know, since 1990 LA Kelley Communications has been educating the hemophilia community about hemophilia. In the February 1998 issue of PEN, we actually were the first to break the news to the world about the first hemophilia gene therapy trials. Gene therapy is a subject we care deeply about.
Gene therapy for hemophilia is moving closer to becoming a reality, but it can’t become a reality unless patients participate in clinical trials.
uniQure is one company that has reported encouraging data with respect to factor IX levels in its recent phase 2b Dose Confirmation trial for a hemophilia B gene therapy. Discover more about uniQure’s current gene therapy trial for hemophilia B by reading a message from uniQure, and clicking through the link below. And please consider whether you’d be interested in participating in a trial!
My name is Dan Leonard, I am the Senior Director of Global Patient Advocacy at uniQure. uniQure is a company developing an experimental gene therapy to treat severe and moderately severe hemophilia B. We are currently conducting a phase III clinical trial – known as the HOPE-B trial – and wanted to make the community aware. You can find more information about the clinical trial at the website www.hopebtrial.com . You can also find more information at a government-sponsored website, www.clinicaltrials.gov . Simply enter NCT03569891 in the “Other terms“ search field, and you will see where the clinical sites are located along with other important information.
The most important step to take when considering a clinical trial is to speak to your doctor. Your doctor can help you understand if a particular clinical trial is appropriate for you and if you meet the criteria for the trial.
Daniel Leonard, Senior Director of Global Patient Advocacy, uniQure, 339-970-7068 . 339-970-7068