“Thank you for your selfless act of being our daughters’ donor. You will forever be our hero!”–the girls’ mother, Michele, to their donor, Ingo.
Michele and Brett were overjoyed by the birth of their identical twin daughters Elizabeth and Kathryn. But within hours, they learned that something was terribly wrong. Both girls had low platelet counts, low hemoglobin and no clotting agents to prevent excessive and potentially fatal bleeding. The newborns were rushed to a larger hospital where they could get the intensive care they required. It was only the start of a long and difficult journey for the entire family.
The girls were diagnosed with a rare and fatal genetic disorder. During their first four years, frequent transfusions kept the girls relatively healthy, but they knew their marrow would eventually fail. Their only chance at survival would be to find a matching donor—a stranger willing to step forward to save their lives.
“My heart goes out to any mother who has a sick child,” Michele said. “It’s one of those things that you just don’t understand until you experience it.”
Nearly thirty years earlier, a little girl in Germany was searching for a match. Many people were moved by her story and joined the registry to help her. One of them was a young man named Ingo.
While Ingo was not a match for that little girl, he was thrilled to receive a phone call—almost 25 years later—informing him that he was a potential match—not just for one patient, but for young, twin girls both needing a marrow transplant. Ingo shared the exciting news with his wife and children; “We all rejoiced … I have a daughter who is now 14 years old … there was no question whether I would donate.”
Ingo is proud of being able to help this family and give these two young girls a second chance at life. “I encourage everyone to join the registry,” he says. “It’s a great feeling to help other people.”
Today, Elizabeth and Kathryn are happy and healthy nine year olds who love horses, doing the hula hoop and playing with their older brother Lee Roy. “They can now just be normal little kids again and that’s what we want for them,” said their father Brett.
Share the excitement as Elizabeth and Kathryn meet their donor for the first time .
Be The Match Gala
Elizabeth and Kathryn met Ingo for the first time at the 9th annual Be The Match Gala. Thanks to the generosity of attendees and supporters, this year’s gala raised more than $400,000 to help patients in need. For information about attending or supporting next year’s event, visit BeTheMatch.org/Gala.
Seun is not the kind of guy to back down from a challenge. Not only is he a graduate of Yale Law School, he is also a skeleton racer—a winter sport similar to luge—with his eye on competing in the 2018 Winter Olympic Games.
But no amount of study, practice or discipline could prepare him for his greatest challenge—being diagnosed with two terminal blood cancers one week before his 26th birthday. He needed a marrow transplant, and fast.
The bad news got worse, when he learned that his Nigerian ancestry could make it harder to find a match. Because patients are most likely to match someone of the same ethnic background, he turned to his homeland in hopes of finding a donor.
Unfortunately, Nigeria didn’t have a registry. But Seun wouldn’t take no for an answer. Instead, he launched Nigeria’s first bone marrow drive. And while Seun was busy helping improve the odds that other patients could find a match, an umbilical cord unit on the Be The Match Registry would his life-saving cell source.
Seun received his transplant and is back in training, on track to pursue his Olympic dreams.
His career, however, has changed course. He switched from a legal career to working for the American Cancer Society, committing his life to helping other cancer patients gain access to treatment.
And he didn’t stop there. He has also helped start Nigeria’s first marrow donor registry, so people of African ancestry can find their match—no matter where in the world they live.
As told by Jeff, donor and advocate
“Save this girl’s life and I’ll be an advocate to the cause for the rest of mine.” This was the short prayer whispered just before I was anesthetized to harvest my bone marrow that was perfectly matched to a sixteen-year-old girl fighting leukemia. Eight years later, I’m please to share that my recipient, Kim is living life to the fullest with my adopted immune system. 100% engrafted and cancer-free!
Within a few days of the procedure life returned to normal, but my appreciation for it was different. Somewhere out there was a young lady fighting for her life and I knew that her family was asking themselves the same questions that I was. Were my cells good enough? What would happen if they weren’t? At the very least I knew that the procedure would give this family something that they had longed for, which has been confirmed by countless other families fighting a blood cancer. For many a bone marrow transplant can be a cure, but for all it provides hope.
To me, a bone marrow transplant is the perfect fusion of fate, science and miracle. Fate, to know that a compatible stranger chose to join a bone marrow registry; science, to facilitate the process; and miracle, to know that these life generating transplanted cells can alter the course of another person’s mortality. Believing this – I had to get involved further.
I started my advocacy at marrow drives, lending a hand to dismiss the fears about the donation process. As we all benefit from talking to others with firsthand experience; attending these drives helped educate and answer questions of those interested but concerned about the procedure. Several people join the registry, as I did, for someone they know who is in need of a transplant. At these drives, I help folks see the “Pay It Forward” concept. Although you may not be a match for the person you know, you could be for someone else in need, just as another person joining at another drive somewhere out there may be a match for your acquaintance.
I am involved with the CIBMTR (Center for International Blood and Marrow Transplant Research) which is the research program of Be The Match. As a consumer advocate, I’ve participated over the last five years helping to translate information, such as outcomes from a clinical trial into a readable format for the typical lay person to understand. It was an honor to be asked this past year to co-chair this advocacy group.
I’m also very proud of the money raised by co-chairing a local Be The Match Walk+Run event for the past three years. These events bring together survivors, caregivers, patients and donors to celebrate victories, honor those lost and help recruit new potential donors to the registry.
Finally, I take the most pride in my volunteering efforts as a stem cell courier. The transplant process is a logistical orchestra of physicians, scientists, lab techs, collection center personnel and transplant hospital staff all coming together for a patient in need. It is a privilege to hand-carry these coolers containing someone’s “second chance” from their altruistic donor to their intended recipient. A trained volunteer courier is as close as it gets to being Santa Claus.
If you read this chances are you’re already somehow involved with the cause. Mine are but a few of the many ways to help and I encourage all to engage. Maybe it’s writing to congressional members in support of NMDP/Be The Match’s legislative activities; or it’s reaching out to a local recruiter and helping in your community. Whether you’re a caregiver, a long term survivor or a fellow donor – we all have unique experiences that are vital to the next patient in need. As for me, I’ll keep holding up my end of that prayer.
August 26, 2014 is a day that will forever be branded in our minds. That’s the day our doctor told us “Your daughter, Eva, has leukemia”. When you hear the word “leukemia” and you aren’t prepared, the word scares the hell out of you. You’ve heard it before but really what is leukemia?
We were terrified. Genetic testing showed that Eva had a high-risk form of leukemia with a higher chance of the disease coming back after treatment and lowered chance of long term survival.
We began hearing new words like “bone marrow transplant” and “donor” and found out that Eva’s life would be in the hands of a complete stranger.
Chemo could kill the cancer and doctors could give our daughter a fighting chance, but without a bone marrow transplant, there was no chance for long-term survival. We immediately began the search for an unrelated donor on the Be The Match Registry®. Doctors said it could be months before a match might be found, and that there was a chance we’d never find one.
Soon we hit 90 days since Eva’s diagnosis, 80 days in the hospital in isolation, and two rounds of intense chemo and recovery.
Then the most wonderful thing happened. Our nurse gave us the news that Eva had a match. Someone was willing to give Eva a second chance at life. It was an amazing feeling to think that in all of the world someone had said, “I don’t know you, but I am willing to give to you what I have.”
Our hematology/oncology and bone marrow transplant teams worked together set a transplant date, and confirmed with “our donor” that the date worked with them and they were ready to move forward.
Leukemia can be a rollercoaster ride. Plans can change quickly. Eva developed an infection following chemo. We received heartbreaking news that Eva was not healthy enough for her transplant. She would need another round of chemo.
As scary as this was, we wondered about the donor. Would they want to continue with us after this change in plans? We were happy to learn that our donor was flexible with Eva’s needs and a new transplant date was set.
Eva contracted another infection following the next round of chemo and needed surgery. This pushed out the transplant date…again. We were worried. Our donor had to be struggling and anxious with all of these changes. We couldn’t imagine what they were experiencing. They didn’t know Eva or our family. We were strangers.
A new transplant date was set yet again. We were all looking forward to it. It became a day of hope.
After the last round of chemo, we checked into the Ronald McDonald House so we could be close to the clinic for more tests. Everything seemed to be going well until Eva suddenly developed a fever. Such a simple word can carry so much fear when battling leukemia. A fever literally scares you to death because her immune system wasn’t strong enough to fight off infections.
Then we got the news we never wanted to hear. After many tests, our team called me and my wife into a small room. They said, “We have done all we can for your daughter. It’s time to take her home and spend her final days with family”.
I cried during the drive home, but somewhere along the way I had a thought that cut me to the core: What and how would they tell “our donor”? This is someone who said, “I will do what I can to help.” After all the tests and the many date changes, it’s now all over. This person doesn’t know us and as far as they knew, they were going to help save a life. How would they tell this person and how would they take the news? My heart went out to our donor.
We said good bye to our baby three days after her 17th birthday. To say it was hard to get back to what was now our life does not come close to describing it.
It wasn’t long after we started thinking about “our donor” again. This person had been so much a part of our lives for months and even today holds a special place in our hearts.
We want to take this time to thank all of the special people out there who come forward and offer to give life to others. Many complete the process and are able to enjoy contact with the patient and their families. Others are never matched. Others, like our donor, are selected and for some reason the process stops before the transplant.
You are all heroes in our heart and the hearts of other families. I hope this note is read by “our donor” and they know how much you mean to us. Thank you for saying yes over and over again. You will always be in our hearts, minds and prayers.
Thank you cannot express our deep appreciation but what more can we say, thank you.
Nearly thirty years ago, a little girl suffering from blood cancer near Wardendorf, Germany needed a donor. Moved by her need for a life-saving transplant, Ingo was joined by some of his friends and they joined the registry.
While not a match for that little girl, a phone call five years ago informed him that he was a potential match for twin girls needing a bone marrow transplant. For Ingo, the news was cause for much excitement. “I was very happy when the call came,” he said. “I myself have a daughter who is now 14 years old and therefore for me, it was no question whether I would donate.”
Once he shared the news with his family, Ingo said he was encouraged that they were equally thrilled about his donation. “My three children rejoiced that I came through as the best donor for the girls,” he said.
When the time came for his donation, Ingo said his willingness to be a donor helped the procedure go very smoothly. “I was quite positive going into the process,” he said. “I would like to highlight the super assistance from everyone who helped with all of my questions during my donation.”
After going through donation, Ingo said he is very proud of being able to help two little girls get a second chance at life. “I am so glad I could help save two lives with my donation,” he said. “Furthermore because the donation has been successful. I tell and encourage everyone to join the registry because it is a great feeling to help other people.”
Ingo will soon meet Elizabeth and Kathryn, the girls he saved at the Be The Match Gala on September 16. Today the twins from Winona, Minn., are happy and healthy and are enjoying life as every child should—loving horses, doing the hula hoop and playing with their older brother.
When Elizabeth and Kathryn’s parents, Michele and Brett, found out the family was going to meet the man whose bone marrow donation saved the girls, they said they could hardly think of what to say to the person who gave them back their children.
“Thank you for your selfless act of being our daughters’ donor,” Michele said. “You will forever be our hero!”
You can be the match for someone, too! Join today at join.bethematch.org
Laura is a Mortgage Advisor and lives with her partner and five year-old son in the UK. Family means more to Laura than anything in the world, so it seem
ed natural that when she saw an appeal on television for a young child who needed to find a match she immediately joined the registry.
“I think it’s really important that if you would be willing to take something, you should be willing to give it too,” says Laura. “I would move heaven and earth to find a match for my son if needed. I wouldn’t hesitate taking a donation from a stranger for him, so I should be willing to donate my bone marrow for someone else’s son or daughter too.”
Knowing what to expect
When Laura joined, she was committed to donating, but never thought she’d be called as a match. “I knew the odds were lower for me—especially since the majority of donors are male,” says Laura.
Years later she was called up as a potential match, but ended up not being a close enough match, so when she got another call, she that the same thing would happen again. After further testing, it was confirmed that Laura was the closest match for the patient.
Laura’s family and friends had a few questions like if she was worried. In general, people were amazed by how it all worked. “When I found out I was the best match, any concerns I had didn’t really matter,” says Laura. “Anything I would be going through would be nothing in comparison to what the patient was experiencing.”
Anthony Nolan and given Laura a booklet letting her know what to expect and the doctors had explained the procedure. “I felt well prepared and pretty calm about it all,” says Laura.
A fast recovery and a message from her patient
She says, “I was amazed at how quickly I recovered. The day of the operation, I mostly slept, but the next day I was able to walk around without any pain or side effects.” Laura did have some mild bleeding from where they had extracted the marrow, but generally speaking, she says she was “fighting fit” the next day.
Laura chose to receive updates about her recipient. She remembers the first card she received. “I’d had a rubbish day at work and was in a pretty bad mood,” she says. “I come home to this card and it really helped me put things into perspective. I was so pleased to find out he was doing well and was in remission.”
Words of advice
The one piece of advice Laura gives to people is: REGISTER! “Even if they are a stranger, that person you’d be donating to is someone’s parent, sibling, child, grandparent, etc.,” she says. Before going through the donation process, Laura was petrified of needles. “I’ve lost count of the amount of times I’ve fainted at the sight of blood. However, I’d donate again in a heartbeat.”
You can be the match for someone, too! Join today at join.bethematch.org
Many years ago, Denise (Brazil) had read some articles and watched TV documentaries about donating organs and bone marrow. When there was a recruitment event in her town in 2010, she jumped at the chance to join the marrow registry. “I didn’t have any concerns” said Denise. “I was happy to join.”
Four years later, she received a call from the Brazilian registry, REDOME. “I was at work and was very surprised,” she said.
There wasn’t a moment when Denise felt afraid, but her family felt otherwise. Initially they were uneasy because they weren’t familiar with the procedure. However, once Denise spoke to the doctor and got the answers her family was looking for, their apprehensions went away. Her friends on the other hand, were really excited about it from the start. A few of them were so inspired by Denise that they have since joined the registry.
Denise went on to donate PBSC. She says that both
the REDOME and the hospital staff made her feel at ease about the process. Leading up to her donation, she had to take some Filgrastim injections. “It was fairly easy,” she commented. Following the donation, Denise didn’t experience any side-effects. She said, “I didn’t need any special care.”
The most memorable moment for was when she received the first update about the patient after the transplant. “It said that he was recovering well. I was EXTREMELY happy!,” she recalls.
Just recently, Denise and her patient, William, started communicating by email.
For William, the transplant was a life or death situation. Although he experienced some rough times, his family and his positive attitude help get him through and is now on the road to recovery. “I value each day that I am alive,” said William. “I thank God every day for my wonderful donor, Denise. For her sacrifice to give me her stem cells.”
You can be the match for someone, too! Join today at join.bethematch.org
This September, give a gift in support of research to help drive the scientific advances that save and improve patients’ lives.
Tremendous gains have been made, but we still lose far too many sons, daughters, mothers and fathers to blood cancers for which a marrow transplant could be a cure. Researchers are working around the clock to offer hope to patients and their families, improve matching, reduce complications, and help more patients live longer and healthier lives.
Basic research made all the difference for four-year-old Kyle, who was suffering a life-threatening disease known as aplastic anemia. His only hope was an immediate life-saving marrow transplant. He did not have a matched donor in his family, so his doctors turned to the Be The Match Registry.
Kyle’s case presented a special challenge. Kyle’s mother is Chinese and his father’s is Caucasian. Patients who are ethnically diverse often have genetic profiles that are less common, and good marrow matches are harder to find. Years earlier, a search for this kind of match would have been focused on donors who were either Chinese or Caucasian, and the likelihood of a perfect match would have been much lower.
But thanks to Be The Match’s Bioinformatics Research Team, scientists had identified three populations with genetic profiles similar to Kyle’s: Hawaiians, Vietnamese, and Filipinos. Since there were very few Chinese/Caucasian potential donors on the registry, they knew where they needed to look for a match—and they found one. A Hawaiian man was identified—U.S. Navy Lieutenant Kawika Segundo— and Kyle had his life-saving transplant!
The science of ancestry and genetics—research funded by Be The Match—made Kyle’s marrow match possible and saved his young life. With new research, we continue to catalog more precise genetic data and improve our matching techniques to save more lives.
You can be part of this ground-breaking work. Help other patients like Kyle get the life-saving transplant they need: give now in support of life-saving research.
As a young adult in her early twenties, Constance was embarking on the next stage of an already successful modeling career. Photos of her had already appeared in magazines, and she was beginning to work with designers from popular reality television shows.
But, the sickle cell disease (SCD) she had been coping with since birth suddenly got worse and caused her modeling career to take an unexpected detour. “I tried to work through my disease and the pain, but my body just couldn’t take it,” she says.
SCD is an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and they block blood flow. Patients have repeated episodes of excruciating pain and worsening permanent damage to vital organs.
So instead of runways, TV sets and photo shoots, Constance was spending more and more of her time in hospitals due to pain episodes and other harmful effects caused by the disease.
“I was either hospitalized anywhere from 3 to 10 days or rushed to the ER every month,” she recalls. “I had to bow out of the second half of my modeling contract because I couldn’t get healthy enough to even leave my house, let alone the state.”
Transplant offers hope of a cure
Today, Constance is a healthy 29-year-old ─ and one of a growing number of people with SCD who had treatment with a blood or marrow transplant, the only known cure for SCD.
Constance had transplant in 2012, when she was 25 years old. Her donor was her younger sister, Samantha, who was a 10 of 10 HLA (human leukocyte antigen) match.
Like many transplant recipients, Constance calls the day of her transplant “my new birthday” and her second chance at life. And like many transplant recipients, it also took a while for Constance to adjust to life after transplant. Constance remembers that it was only after her “first new birthday,” when she was finally off of all her medicines, that she told herself, “Okay, this is real. You have a life now.”
And her life now is very busy. Her modeling career is back on track and she’s sharing her experience with others ─ including writing a book.
Reflecting back on her time before transplant, when SCD limited her modeling career, her social life, and her plans for the future, Constance says she feels thankful every day. “I never ever could have imagined that I would have the life I have now, and that I would be able to do the things I can now.”
September is Sickle Cell Disease Awareness Month – help us spread the word by sharing our Facebook post about SCD awareness through our Patients Connect page. And to learn more about Constance’s story, visit her website at road2thecure.com.
Whether you or your loved one had a transplant, you’ve been through a lot. Even if you were very upbeat throughout treatment, it’s normal to sometimes feel down, worried or anxious after transplant.
But when feelings of anxiety, worry or feeling down won’t go away or get in the way of activities of everyday life, it’s time to ask for help. Read on to learn about symptoms of depression and anxiety, and how to ask for help.
“For the first 3 months after transplant, I was severely depressed. I was in a ‘why me’ state for a while. I didn’t want to get out of bed. My doctor prescribed antidepressants. That, along with the support of my mom, really helped.”
– Danielle, transplant recipient
Recognizing anxiety and depression
Symptoms of anxiety include feeling worried, fear or dread. Some of the symptoms of depression include:
- Sleeping more or less than usual or not being able to sleep
- Not being interested or finding pleasure in activities you used to enjoy, including sex
- Having trouble concentrating, remembering or making decisions
- Feeling guilty, hopeless, helpless or worthless
- Thoughts of hurting or killing yourself. Call the National Suicide Prevention Lifeline at (800) 273-TALK (8255) any time to talk with someone who can help.
If you’ve had any of these symptoms most days for 2 or more weeks, it can be a sign that you need to ask for help. Tell your doctor about your symptoms and ask what could help you. Your doctor might suggest a prescription medicine, talking to a therapist or both.
Sometimes it can be hard to talk about these symptoms. If you’re talking to your doctor, it might help to say, “I haven’t been feeling like myself lately. I’m concerned that I’m depressed or overly anxious.” Or, if you’re concerned about a loved one, you might say, “You don’t seem like yourself. How are you feeling?”
“I wasn’t really interested in any of the things I used to do. I was so busy trying to make it through each day that I never noticed that I had changed. My doctor explained that I was depressed and overwhelmed – and he prescribed anti-depression medicine. That helped. Both my daughters were happy to hear me laugh again.”
– Jeanette, transplant caregiver
Sometimes, anxiety is so intense after going through a very difficult experience that post-traumatic stress disorder, or PTSD, develops. If untreated, PTSD may affect your relationships and your ability to function at home, school or work.
Some of the symptoms of PTSD include:
- Reliving your experience over and over
- Feeling emotionally numb, guilty, depressed or worried
- Feeling easily startled, tense or “on edge”
These symptoms may come early in your recovery or later on. If any of these symptoms last more than a few weeks, they might be PTSD. Tell your doctor about your symptoms. Many people with PTSD get better with medicines, counseling and/or group therapy.
The search for meaning in life is part of being human. During a health crisis, it’s normal to move through an ongoing emotional process of suffering, coping and making meaning. Reflect on your transplant journey, or your loved one’s transplant journey, and how it has affected you. This can help you make sense of your situation and find meaning. Ask yourself:
- What new insights have I gained from the experience?
- What is now clear in my life that wasn’t before? What is less clear?
- How have my priorities changed?
It may help to write your thoughts and feelings in a journal, or talk about your feelings with a counselor, social worker, psychologist or faith leader. Some people find it helpful to talk with others, perhaps in a support group, who have gone through similar experiences.
If you need to talk, Be The Match patient services coordinators are available to listen, answer questions and provide support. Call 1 (888) 999-6743 or email firstname.lastname@example.org.
If you want to connect with someone who’s “been there”, the Be The Match Peer Connect program will put you in touch with one of many trained volunteers who’ve been through transplant. To request a connection, visit BeTheMatch.org/patient-peerconnect or call 1 (888) 999-6743.