An Opportunity to Save Lives

Posted December 12th, 2014 by admin and filed in News

Bath 2

Mary and Jason know first-hand what watching a child battle for their life feels like. It feels like salt-water running down cheeks and nights without sleep; like blinding hospital lights and anxiously tight hugs. Remarkably, though, for Mary and Jason, it also feels like an opportunity for good. These incredible parents have turned the hardest experience of their lives into an opportunity to help others – an opportunity to save lives.

Mary and Jason’s journey began in June of 2014, a few months after their twin boys, Lachlan and Calhoun, started day-care. “They were both getting sick frequently, but Lachlan just wasn’t bouncing back like Calhoun,” said Mary.

After a series of reoccurring ear infections, Mary and Jason brought Lachlan to a nurse practitioner. As parents, they felt something was wrong. That something, they would eventually learn, was a rare form of childhood cancer called juvenile myelomonocytic leukemia (JMML).

The news was flooring. “We were in absolute shock,” said Mary. Quickly, though, they jumped into action with one goal in mind – do whatever it takes to save their baby. Because JMML is so rare, with an estimated 1-2 cases per million children born, very little is known about the cancer and few treatment options are available. Lachlan’s only hope for survival was a marrow transplant.

Unfortunately, like 70% of patients in need of a transplant, Lachlan did not have a suitable marrow donor in his family. For this reason, Lachlan’s doctors turned to the Be The Match Registry. “Right away, we found out Lachlan had 10 matches,” said Mary.

However, Mary decided that a match wasn’t enough. The family recognized Lachlan’s experience was an opportunity for them to help others.  “There are other people just like us that are waiting for a match,” she said. “Getting people to join the registry has turned into a passion of mine. Lachlan is going to make a difference for Be The Match.”

Transplant day 6

So, while simultaneously caring for Lachlan and their two other sons, Mary and Jason have selflessly chosen to help others along the way. They gathered their friends and family to hold registry drives, encouraging everyone to support Be The Match and help other patients in need.

Committed to making a difference, the family held their first registry drive only weeks after Lachlan’s diagnosis. Since then, they have set up numerous drives and fundraising events. “We’ve held 6 registry drives and we have about 6 more to come,” said Mary. “There are other people out there that love their child just as much as we love Lachlan, and there are so many other people that need a match.”

Recently, Mary and Jason learned they have a confirmed match for their son. “Lachlan’s donor is a complete stranger who knows nothing about him or our family,” said Mary. “He registered to selflessly save a life.”

Lachlan underwent his transplant in late November; however, this altruistic family’s mission to save lives is just starting. “We do have our donor, but we don’t feel like that’s the end of our journey with Be The Match. It’s just the beginning,” said Mary.

How can you help patients like Lachlan? 

 

  1. Go to Shop.BeTheMatch.org and then click “gifts” to purchase the greeting card Lachlan and his two brothers, Calhoun and Owen, created. A portion of the proceeds for every card purchased benefits patients by contributing to our life-saving research, adding potential donors to the Be The Match Registry and supporting patients and their families during transplant.
  2. Give a gift in Lachlan’s honor. “Supporting Be The Match means everything to us. You can help so many other people, so any financial support given to Be The Match on Lachlan’s behalf, it’s key,” said Mary. Give the gift of life this holiday season!

IMG_2036

 

“What is Inspiring?”

Posted December 3rd, 2014 by admin and filed in News


Five-time Jeopardy! Winner and Be The Match Supporter

wedding-photo-69 (2)Sarah had watched Jeopardy! her whole life. She imagined the day when she would stand under the hot Hollywood lights and amaze people question after question. One thing she never imagined, however, was that her mother wouldn’t be there sharing in Sarah’s moment.

In February 2013, Sarah’s 62 year old mother, Marilyn, received the heartbreaking news that she had acute myeloid leukemia. For months, Marilyn stayed in the hospital receiving chemotherapy. Thankfully, by summer, Marilyn went into remission and was healthy enough to watch her daughter walk down the aisle.

Marilyn’s doctors were planning on pursuing a bone marrow transplant soon after Sarah’s wedding. When no one in Marilyn’s family was a match, her doctors turned to Be The Match Registry and found a volunteer marrow donor.

“Unfortunately, shortly after my honeymoon,” Sarah said, “we found out the cancer was back. We were told she would need more chemo to try to get back into remission before the doctors could do a bone marrow transplant.”  Sadly, Marilyn passed away before she could make it to transplant day.

While Sarah’s mother was unable to receive her marrow transplant, Sarah is grateful for the man who was willing to honor his commitment and help. “Having that person out there, gave us a lot of hope,” she said.

On The Air with Jeopardy!

Just two weeks after her mother’s passing, Sarah’s Jeopardy! dream came true.  During the filming, Sarah made a decision. Her mother may not have been able to watch her compete, but Sarah made sure to keep Marilyn’s spirit with her throughout her five winning appearances. “My mother always wanted to give back,” said Sarah. So, she decided to use Jeopardy! as an opportunity to bring awareness to the organization that brought her family hope – Be The Match.

During her one-on-one interviews with Alex Trebek, Sarah spoke about the importance of joining the Be The Match Registry. As a direct result, she learned that some viewers were so moved that they signed up for the registry. “It’s really gratifying to feel like [my mother] made an impact on others. If I influenced someone else to join, maybe that someone will go on to save a life,” said Sarah.

Sarah has taken the tragic experience of losing her mother and turned it into a chance to prevent more losses like her own. With some of her winnings from her time on Jeopardy!, she plans to help fund donor drives to add more potential donors to the registry.

You can be an advocate like Sarah. Take a minute to learn more about our Action Advocacy Network and then sign up to join.

An Ocean Away

Posted December 3rd, 2014 by admin and filed in News

The life-changing call:

On September 9th Duke’s phone rang. Expecting one of his four children or his parents, he picked up the call. Instead, he heard the voice of a man he had never met – an oncologist. “I need you to come to the hospital tonight,” the doctor told Duke. He broke the news directly, “you have leukemia.”

Duke was at the hospital earlier that day being tested to determine the cause of his declining condition. He knew that something was wrong and was actually relieved to learn of the diagnosis and begin working out a treatment plan.

Shortly after arriving at the hospital that evening, Duke underwent additional testing. Within a day, his results were back. He was then faced with an even harder fact to comprehend, a fact that would shake his entire world: without immediate treatment, Duke only had a month to a month and a half to live.

That was six years ago, when Duke was 44. Thanks to a complete stranger, an ocean away, Duke is alive to share his story of faith, good fortune and, above all – survival.

The fight to survive:

 Shortly after Duke was diagnosed, he started chemotherapy. Amazingly, after a year of extremely aggressive treatment, Duke was pronounced cancer free; but he wasn’t in the clear just yet. His doctors told him they were certain the cancer would come back, and when it did, the disease would be stronger and more aggressive.

Unfortunately less than nine months later, the doctors’ prognosis was right. Duke’s cancer was back, and this time, he needed more than chemotherapy to survive. “My diagnosis was aggressive, so they knew they were going to have to do something to try and save me. The doctors told me, you aren’t going to survive without a marrow transplant,” said Duke.

The search for a match began by testing Duke’s siblings. When they tested negative, his doctors turned to the Be The Match Registry. That’s when Duke won what he would later call his “lottery ticket,” – a matched marrow donor. After intensive chemotherapy to prepare his body, Duke received the transplant that saved his life.

The meeting of a lifetime:

Immediately after his transplant, Duke knew he wanted to meet the young man that gave him his life back. “In my mind, I must have painted my donor a million different ways. I had thousands of questions for him,” said Duke.

In America, if both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Because Duke’s donor was from Germany, the waiting requirement was longer. After two years, Duke was finally able to reach out to the man who, at 27, saved his life by donating Peripheral Blood Stem Cells (one of two methods of marrow donation). Duke offered his donor the opportunity to fly to Colorado so they could meet.

In October, Duke’s donor, Marco, did just that.  Before he arrived, Duke had so many things he wanted to tell Marco, but most of all he wanted to say thank you. “There is a cascade effect when someone is diagnosed. It cascades to family to friends, to a huge amount of people, not just one. I wanted to make sure Marco knew that what he did affected a lot of people. I wanted my entire family to have the opportunity to give him a big hug and say thank you”

Marco and Duke spent the next 10 days together, getting to know each other and developing a deep bond. “It was definitely a connection we will maintain,” said Duke.

The blessings along the way:

When Duke looks back on his experience, he believes God had a plan for him and this faith is what helped him through the entire ordeal. “If everything was perfect, and bad things only happened to bad people, life wouldn’t be as brilliant as it is,” he said. “Bad things happen to good people too, there is no way around it, this allows us to realize just how fortunate we are.”

In addition to recognizing how fortunate he was, Duke learned something else about himself – he is stronger than he ever could have imagined. “You may think you know how you would respond to a life-changing event, but I would argue that you will never really know how strong you are until you are in the foxhole, fighting for your life,” he said.

Marco did what he promised, donated marrow to save a life. “At the end of the day, that’s what you want. You want everyone to have the chance like I did,” said Duke.

 

Hope For Judah

Posted December 2nd, 2014 by admin and filed in News

In sub-Saharan Africa, an estimated 50-80% of children with sickle cell anemia will die before adulthood*. This is a fact that Maryl and Bryce never lose sight of.

High school sweethearts, the couple always knew they wanted to adopt and the day they met their sons—Judah and David—was the best day of their lives.

Judah fmaily photo (1)

The new family traveled home from the Democratic Republic of the Congo and spent the first two weeks of their homecoming nesting. “The first time we left the house was for the boy’s newborn wellness checkup,” says Bryce. Though the boys were 2-years-old, they had not had access to this important medical screening in the Congo. Everything looked good, but a follow-up call reveled devastating news—Judah had sickle cell disease.

Maryl, a nurse, immediately understood that sickle cell was a life-changing diagnosis. Thankfully, the initial care Judah required was minimal. Then, one morning something wasn’t right. Trusting their instincts, Judah was rushed to the hospital and an MRI revealed that their precious little boy had experienced a significant stroke.

“When we got the call that Judah had sickle cell disease I couldn’t look at our homecoming pictures without being mad. This wasn’t supposed to be us! Then, just about the time we got comfortable with how our lives would be dealing with sickle cell disease, Judah had his stroke,” says Maryl.

The news was hard to take in. Judah’s sickle cell had become much more serious, but a ray of hope shined though—a marrow transplant could be a cure.

“Our doctors explained that, because of his ethnicity, Judah’s hopes of finding a match were low—less than 20 percent,” says Bryce. “Then a 5 out of 6 umbilical cord blood match was located and we thought—wow! He has a match. It felt meant to be.”

Maryl and Bryce sprang into action. With the hospital 3 hours away, the family had to make some hard choices. They sold their house, and Maryl took time away from work so she could be with Judah 24-7. “It was hard, but we got through it,” says Bryce.

Judah_Still_001_small (1)

In total, Judah spent 60 days in the hospital. Fifteen days preparing his body for the transplant and 45 days to ensure his immune system was stable enough for him to go home.  “Restricting a 2-year-old to a 12×12 room for weeks… Judah took it like a champ,” says Bryce. “Especially because he was too little to understand that the chemo and pokes were all for his own good.”

On December 11, the exhausted, but hopeful family was discharged to celebrate the holidays at home. “It was a hard holiday, but we left the hospital feeling like it was worth the sacrifice —that, because of this process, Judah would be able to celebrate many, many more holidays disease free.”

Sadly, on January 7, just as the family was dreaming of plans for a brand new year, they received heartbreaking news. Judah’s body had rejected the transplant.

“We had a lot of sadness after receiving this news,” says Bryce. “It was a true grief process, but we still had hope. We recognized that if Judah was still in the Congo, he would have experienced a very painful life—limited access to clean water, let alone medical care. But this wasn’t his path. He was matched with a family who loves him. His mother is a nurse and one of the best children’s hospitals in the country is only a few hours away.”Sadly, on January 7, just as the family was dreaming of plans for a brand new year, they received heartbreaking news. Judah’s body had rejected the transplant.

Today, the family makes monthly trips to St. Louis for Judah’s blood transfusions. Maryl and Bryce do their best to make “hospital day” fun, but Judah is starting to understand that his disease limits him, asking questions such as, “After no more sickle cell, then can we go to the lake?”

“We are grateful. Because of doctors, researchers and technology—his sickle cell can be cured. And we have dual hope—hope that Judah will find his perfect match and hope that we can inspire others—specifically first generation Africans—to join the registry because so many families have a loved one searching for their match,” says Bryce.

10078870395_78ac09ca38_o (2)

Their faith and support from family and friends help them get through the day-to-day. “We are confident that Judah’s match is out there. If he had been cured at age two, we could tell him about it. Being older, he’ll better understand what he’s going through and, if we’re lucky, one day we’ll be able to hug the special person who will save his life,” says Bryce.

The family regularly host registry drives and does everything they can to spread the word about the need for marrow donors. “It’s given us so much hope to watch our community give, join or volunteer for Be The Match. For us, it means that people care about our son.”

Do something right now to help patients like Judah. Your dollars save lives.

 

*according to a study published by the Public Library of Science (PLOS)

Making Up for Lost Time

Dalton Reno 4

 Sandy and her husband Jared try not to take anything for granted. To them, even the most trivial things, like walking outside or going to the store, are moments to be grateful.  “You value life so much more when you have watched someone fight for theirs,” said Sandy. Since their son, Dalton was eight weeks old, Sandy and Jared have watched him battle for his life and, ultimately, win.

When Dalton was only two months old, he started to experience frequent bacterial and skin infections. After months of appointments which produced few answers, doctors finally learned that Dalton’s symptoms were a result of a much larger issue, a genetic immune system disorder called severe combined immunodeficiency (SCID). The diagnosis was very scary. Sandy and Jared were told that if untreated, babies with SCID usually die within a year.

Dalton’s best hope was a marrow transplant. Sandy and Jared were tested, but neither of them were a match. Dalton’s doctors then turned to the Be The Match Registry to find an unrelated volunteer marrow donor.

Thankfully, Dalton was lucky. Multiple matches were identified and shortly after, Dalton’s doctors requested further testing to determine which individual would be his best chance for survival.

Dalton Reno 1

Before his transplant, Dalton underwent eight days of high dose chemotherapy to prepare his body to accept the new cells. While Sandy and Jared knew that a marrow transplant was Dalton’s best hope, watching their child suffer was emotionally taxing. For Sandy, the 100 days post-transplant were “the scariest and most stressful of my life,” she said.

After a long recovery, riddled with complications and stress, Dalton was finally able to return home. “You look at him now,” said Sandy, “and you would never know what he has been through. He has gained weight and has his hair back. He is making up for lost time!”

Without the generosity of his selfless marrow donor, Dalton would not be alive. The family is anxiously waiting for the day when they can thank the stranger that saved their baby’s life*. “Thank you will never be enough,” said Sandy, “but it is all we have. It comes from the bottom of my heart.”

Dalton Reno 3

Please find it in your heart to help give a child the gift of life this holiday season by supporting the life-saving work of Be The Match. Your gifts help more patients get the marrow donation they need.

*If the donor center allows and both parties consent, a donor and recipient or a recipient’s guardian must still wait one year before they can exchange contact information.

Born a Fighter

Posted November 26th, 2014 by admin and filed in News

Victoria Murray 2Today, if you were to watch 10-year-old Victoria at the pool or learning ballet, it would be hard to imagine that this lively, active girl had to fight for her life.

Victoria’s health journey started the day she was born: May 7th 2004. When she came out incredibly bruised and jaundiced, doctors ordered a blood test.  The test results, indicating Victoria had very few platelets in her blood, made clear that something was wrong.

First time parents, Katie and Jeff immediately geared up to help their little baby survive. After two years of platelet transfusions, doctors’ appointments and medical examinations, Victoria was finally diagnosed. The verdict: little Victoria had neonatal thrombocytopenia, a blood disease that prevents the body from correctly producing platelets.

The news was devastating. “Her doctors told us there were no other treatment options. A marrow transplant was her best chance,” said Katie.

The family spent the next few years preparing. To give Victoria the best chance for a successful marrow transplant, the Portland family temporarily relocated to Seattle, where the children’s hospital had greater experience with transplant.

Still paying a mortgage on their Portland home, relocating took both a financial and emotional toll. Now a family of five, they crammed into a small two-bedroom apartment close to the hospital. This new living arrangement was the family’s best option for keeping Victoria healthy and getting to doctor appointments easily.

Victoria Murray 3Being far from family and friends was a challenge, but the most difficult part was seeing Victoria suffer. To prepare for her transplant, Victoria underwent intensive chemotherapy and low-dose radiation, which took a toll on her small body. “She was very lethargic. She could not play,” said Katie. “As a parent, that’s super hard to watch.”

Thankfully, though, the family had hope. Like 70% of all patients who need a marrow transplant, Victoria did not have a matching donor in her family. Her doctors turned to the Be The Match Registry and within a few months, found a volunteer marrow donor willing to save Victoria’s life.

In July 2009, when she was 5 years old, Victoria received her life-saving marrow transplant. While the recovery was taxing, by the following year, Victoria was the healthiest she had ever been. She was back in school full time and participating in her favorite activity, dancing.

If the donor center allows and both parties consent, a donor and recipient must still wait one year before they can exchange contact information. After a year of anticipation, Katie reached out to Victoria’s marrow donor – a woman from Texas with children of her own. “I wrote her a letter. It was hard to put in words what she meant to us. What she gave is just an un-measureable gift.”

Today, Victoria is happy, healthy and full of life. “Looking at her, you would never know what she has been through,” said Katie. “Be The Match saved my daughter. There are no words to express how much that means to me.”

You can give children like Victoria as second chance at life. This holiday season, give the gift of life!

Time to Cozy Up For a Cause!

Posted November 24th, 2014 by admin and filed in News

Be The Match has partnered with Faribault Woolen Mill, ILLUME Candles and Kindly Coffee to offer cozy holiday products

ENews Thumbnails 300px x 190x2As the weather gets colder and the days get shorter, it’s the perfect time to get cozy. Be The Match launched its “Cozy Up for a Cause” holiday campaign with Faribault Woolen Mill, Illume Candles and Kindly Coffee, to fulfill all of your cozy needs.

A portion of the proceeds from selected products goes toward helping patients with blood cancers, like leukemia and lymphoma, find their life-saving match.

  • Snuggle up in a soft throw or a warm trapper scarf made by Faribault Woolen Mill. Founded in 1895, Faribault has a long history of producing fine woolens. Purchase their striped scarves in gray/olive and gray/peach or Mill Street Throws in olive, khaki, gray and blue. See their featured products.
  • Stay warm and energized with a hot cup of Joe from Kindly Coffee. Purchase their exclusive Be The Match single-origin roast—a high-quality, organic, whole-bean coffee.
  • What cozy package is complete without candles? Light up your home with limited edition ILLUME Arlo Ceramics and Demi Boxed Glass candles in “Balsam & Cedar” or “Woodfire” fragrances. Check out their offer.

Either purchase items separately, or buy one of each for the perfect holiday gift package. Cozy Up for a Cause items are available through January 5, so start your holiday shopping today!

Hadley’s Christmas Wish

Posted November 21st, 2014 by admin and filed in News

blog

Last year, if you were to bring up Christmas around Ashlie, she would begin to cry.  In the past, Christmas had been a celebratory time, filled with food, presents, and most of all, family. However, during 2013, celebrating Christmas was something Ashlie and her husband Brad didn’t even want to think about. 

That’s because Christmas of 2013 would be different. This year, Christmas would be filled with medical tests, hospital beds and, of course, doctors.

Ashlie and Brad’s baby girl, Hadley, would spend her first ever Christmas battling cancer in the hospital. “Thinking about spending Christmas in the hospital with a sick child is so hard,” said Brad. “We made it as fun as we could, but as a parent, watching your daughter meet Santa for the first time while in an oncology room, it just breaks your heart.”

Hadley was diagnosed with acute myeloid leukemia when she was 6 months old. After celebrating her first Thanksgiving with her siblings Maddie (7) and Molly (5), Hadley’s demeanor changed. “Hadley wasn’t focusing, and she didn’t have control over her balance,” said Brad. “She was having trouble holding her head up, the next day, when she couldn’t even sit up, we brought her straight to the ER.”

A week later, the family learned that Hadley had cancer. “The diagnosis was massively overwhelming. You’re not sure what to think and your first fear is what’s going to happen to my 6-month-old daughter? What’s going to happen to my family? It was just completely saturating and overwhelming,” said Brad.

Ashlie felt the same way. “Our world literally came crashing down, right before our eyes. I’ve never felt so helpless. I’ve never been so absolutely terrified,” she said.

Despite the frightening diagnosis Brad and Ashlie sprang into action and made a plan to get Hadley the most excellent care possible. After two rounds of chemotherapy at the hospital in their hometown of Louisville, Hadley’s parents decided that she should transfer to Cincinnati Children’s Hospital, 1.5 hours away.  The Children’s Hospital turned into Hadley’s full-time residence for the next 5 months,where she underwent an additional round of chemo and eventually a marrow transplant.

Finding a matching donor for Hadley, was just one of the many challenges the family endured during those months in the hospital. Inspired to help families searching for a match, they held a registry drive in Louisville and friends and family held additional drives across the nation. Moved by Hadley’s sweet smile Brad and Ashlie’s passionate plea, people from their hometown lined up around the block to register. “We went through 1,300 swab kits in the first hour,” says Brad. “It

After months of searching, the family’s prayers were answered. Hadley was matched with an unrelated marrow donor—a selfless young man in his 20’s. “It was everything. Knowing that she had a match gave us hope to keep going,” said Brad.was amazing to know that so many people cared.”

blog3

This April, Hadley received her life-saving transplant. Forever grateful, they refer to her selfless marrow donor as ‘Hadley’s angel.’ “And that’s truly what he is,” said Brad, “I’ve never been more thankful for anything in my entire life. His gift was truly a blessing.”

While Hadley’s road to recovery is not yet over, Brad and Ashlie are hopeful that Christmas of 2014 will once again be filled with family gatherings and joy. “Our only wish is that we get to be together and celebrate as a family,” said Brad.

So many other families have the same wish—to have more time with their loved ones. More time to make memories over thanksgiving dinner and Christmas stockings. You can give this gift. “There is no easier way to make a difference,” said Brad, “A donation of $100 to add someone to the registry could save a life. A simple cheek swab could give someone their future.”

blog2

Help Hadley’s Family pay-it-forward:
Brand and Ashlie have raised nearly $15,000 for families in desperate need of a marrow transplant. “Thousands of parents every year go through what we went through, and they need help. Be The Match has been with us throughout Hadley’s entire ordeal — we probably wouldn’t have her without them — and we want to help the next set of parents in need.” A donation of $100 to add someone to the registry could save a life. Give now!

Ayoka’s Donor Story

Posted November 12th, 2014 by admin and filed in News

Ayoka-Blandford_Donor_1917Ayoka’s experience as a marrow donor sparked a personal campaign to educate others about Be The Match®. In fact, the single mother of two, chronicled her marrow donation experience on her blog for all of her followers.

“I’ve shared links and other information from Be The Match because I know we still need more people of color to join,” Ayoka said. Ancestry is important in matching patients to donors, but African American patients have the lowest odds of finding a match compared to all other populations – and the most diverse tissue types – which makes the matching process even more challenging.

Ayoka can’t remember the exact date she joined the Be The Match Registry® as a potential marrow donor. She was in college back then.

She heard nothing for the next two decades. Then, in the summer of 2012, Ayoka received a letter saying that she was a potential match for a 12-year-old girl with leukemia. “I got so excited, and a little teary-eyed,” she remembered. “I called the very next day and told them I was still interested.”

Leading up to the donation, Ayoka underwent several medical tests to determine if she was healthy enough to donate and if she was indeed a match for the recipient. Shortly after these tests, Ayoka was told she could move forward with donation.

In her case, the patient’s physician had requested a peripheral blood stem cell (PBSC) donation. This is one of two methods of collecting blood-forming cells for marrow transplants. The same blood-forming cells that are found in marrow are also found in the circulating (peripheral) blood.

PBSC donation is a nonsurgical procedure, called apheresis, which is similar to donating blood. Five days prior to donating, PBSC donors receive injections of a drug called filgrastim to increase the number of blood-forming cells in their bloodstream.

While filgrastim can cause flu-like symptoms, Ayoka was committed nonetheless. “I had bone pain and bad headaches, but I was just like, ‘I can power through.’” Ayoka recalled.

The donation itself took about eight hours but was painless, Ayoka said. During the donation, Ayoka’s donor coordinator, Sarah, was by her side. Sarah walked Ayoka through the donation process to make sure she was comfortable and that there were no surprises.

“Sarah was critical,” Ayoka said. “I had family support, but most of them were out of town.”

The pair formed such a strong bond that they have remained friends. Ayoka also receives updates on the progress of the young patient she helped.

“My daughter is also going to join the Be The Match Registry when she turns 18,” Ayoka said. “It’s worth it! You could potentially save somebody’s life.”

You could have the chance to save a life like Ayoka did. Join the registry today.

A Family’s Love

Posted November 5th, 2014 by admin and filed in News

SchallyThe day 10-year-old Henry died, his brother Eli was in the hospital battling for his own life. The story of their lives is a redemptive story of hope, love and family.

In January 2012, Jenn and Troy noticed a change in their 9-year-old son, Henry. “All of a sudden, Henry was acting out of the ordinary,” says Jenn, “He was displaying symptoms of ADHD, and walking strangely, and he just wasn’t himself.”

Months later, after many doctors’ appointments and tests, Henry was diagnosed with adrenoleukodystrophy (ALD), a rare and often fatal genetic disorder that causes rapid deterioration of the brain. “I remember the doctor saying ‘we expect a very poor outcome,’ says Troy.  “We asked about hope for the future, and learned there wasn’t much.”

Just over a week after doctors told the family Henry was not a viable candidate for a marrow transplant to cure his ALD, the family received a heartbreaking call. Their younger son, Eli, had the same deadly disorder. Thankfully, though, Eli had hope for a cure. Because of his early diagnosis, he was eligible for a marrow transplant.

Jenn and Troy did not delay. Time was their enemy because of the aggressive disease’s pace of destruction. Quickly, Eli’s doctors located a 5 out of 6 cord blood match and the family made plans for Eli’s transplant.

Over the coming months, Jenn and Troy became heroic parents. One night would be spent at home appreciating their final precious moments with Henry. The next night would be spent in the hospital helping Eli fight for his life.

After several rounds of chemotherapy to prepare his body for transplant, Eli received his second chance at life. “His match was such a gift,” says Jenn, “I felt like ‘gosh, finally something went right. Something is perfect.”

“The day Eli came home from the hospital, he walked into the house and Henry, who at that point was barely talking, walked up to Eli with his arms outstretched. He hugged his younger brother and said ‘My Eli’s home!’ And all of a sudden we felt a sense of wholeness again,” says Jenn.

That image perfectly captures Henry and Eli’s relationship. The brothers were best friends, “they did everything together,” says Jenn.

Two weeks before Henry passed away, he rapidly lost the ability to move. Jenn and Troy carried their precious boy into the living room, and set up a comfortable place for him to live out his final days. “That whole time,” says Jenn, “Eli sat beside Henry. He never left. It was like Eli was standing guard.”

Today, Eli understands that had his older brother not been diagnosed with ALD, he likely would not be alive. “Eli is very clear about what happened. He knows he is able to be alive because Henry is not,” says Jenn. And for that, Eli is forever grateful to his big brother.

While Henry has left this world, he is still very much present in the lives of Eli, Jenn, Troy and the hundreds of others that loved him and were touched by his sweet, playful smile. “No matter what,” says Jenn, “We take Henry with us. He’s always with us. He’s changed the people we are in tons of ways and we were so lucky to have had him in our lives.”

There is no better way to show your support than by making a gift to Be The Match. This holiday season; give the greatest gift of all –the gift of life!

Give today!