St. Louis West News Magazine article by Susan Sagarra

This Mother’s Day, one amazing mom, Diane Pearl, of Eureka, said she will receive the best Mother’s Day gift ever. And she wants to share her blessings with the world. This Mother’s Day weekend (May 9-10), Pearl and her family will meet, in person for the first time, the two bone marrow donors – both moms – who saved Pearl’s children’s lives.

The three mothers who will meet – Pearl, 50, Catarina Lindstrom, 40, and Annette Locklear, 30 – come from three vastly different backgrounds and parts of the world but now share a common bond because of Pearl’s two children, Alexandra, 13, and Matthew, 11.

Pearl said that no other gift could ever compare to what she will receive this weekend.

“This will be the best Mother’s Day ever for me,” Pearl said. “I love any Mother’s Day gift – chocolate, diamonds, breakfast in bed – I love any gift given to me. But I’ve got these two ladies who I can hug and say, ‘thank you for saving my children’s lives.’ And there is no other gift that could top that.”

How it all began

The long and mostly painful – but sometimes joyful – journey for Diane Pearl and her husband Mark began when Alexandra was born premature, on April 6, 1995. After numerous medical complications and several years of testing, Alexandra was diagnosed in December of 2000 with the rare disease Fanconi Anemia (FA).

Her brother, Matthew, was born on Jan. 14, 1997, and was diagnosed with Fanconi Anemia shortly after Alexandra, in January of 2001.

Fanconi Anemia is a rare blood disorder that causes bone marrow failure and can be fatal. Most children with FA do not reach adulthood, with an average age of only 22 even after a successful bone marrow transplant. They are also up to 300,000 times more likely to face cancer.

When Alexandra was first diagnosed, as a way to cope, she painted a red heart and wrote B+ on it. That became the family’s new motto, “Be Positive,” and also was the birth of B Positive Inc. to raise money for the Fanconi Anemia Research Foundation (FARF).

When the Pearls learned about their children’s illnesses, FA took over their lives. The most important thing at the time was to find a matching donor for both children so they began hosting bone marrow drives. Both children needed a 6/6 antigen match.

Ideally, siblings are the best match but when their older brother, Austin, was tested, he was not a perfect match. Pearl and her husband could not be donors because Alexandra and Matt each received a different combination of the six antigens that cause FA from their parents (three from Mark and three from Diane). Because their combinations of the antigens are different, the two siblings are total opposites; that is one reason that Alexandra’s bone marrow donor could not also be Matt’s donor.

A perfect match was found for Alexandra but the closest that the Pearls would come to a match for Matt was a 5/6 donor.

Alexandra received her life-saving bone marrow transplant on May 31, 2001, in Cincinnati, Ohio. Matt received his bone marrow transplant on July 14, 2006, in Minneapolis, Minn., where he spent 120 straight days in critical condition in the hospital.

Donors and the recipients are not allowed to make contact or meet until at least a year after the transplant. But when the time was up, there was no doubt about making contact.

And Pearl said she still has no idea how to thank the two moms enough.

“Where is the ‘buy-a-gift-for-a-mom-that-saved-your-children’s-life-store?’ How does a simple mom like me thank these other two moms for selflessly giving me Mother’s Day every day of the year?” Pearl said. “What can I say or do that shows my heartfelt gratitude and appreciation?”

Thanks Moms event

That is where the “Thanks Moms” Celebration comes in.

The Pearls will meet their donors (and their donors’ families) this weekend, when Catarina Lindstrom (Alexandra’s donor) and Annette Locklear (Matthew’s donor) are honored at the fifth annual B Positive Celebration of Life fundraiser. This year’s event is themed, “Thanks Moms,” and is from 6 p.m. to midnight on Sat., May 10 at the Marriott St. Louis West (660 Maryville Centre Drive). KSDK NewsChannel 5 anchor Deanne Lane is the emcee and the Smash Band performs. The annual event, which usually is held in February, is a fundraiser for Fanconi Anemia and B Positive Inc.

“It just seemed perfect to have them fly in to meet for the first time and be with us Mother’s Day weekend,” Pearl said. “We are all very honored to have the Moms join us for this special weekend. I can’t even imagine how it feels for the two of them, knowing they saved a life. We’ve never had two Fanconi anemia survivors who have had the chance to not only meet their donors but to meet both of them at the same time. I couldn’t even imagine them not meeting their donors at the same time. It would have been wrong to have them meet their donors separately.” Matt and Alex’s goal is to raise $50,000 at the event. Tickets are $100 each and can be purchased through alexandmatt.com.

A bone marrow drive also will be held from 6-8 p.m. for attendees at the fundraiser. In addition, with the help of the National Marrow Donor Program registry, the Pearls hope to add 46,000 new donors May 5-19 during their Thanks Mom Campaign. The Pearls are the “spokes-family” for the national Thanks Mom Campaign. The test is a simple mouth swab and is free during those dates (visit marrow.org).

“So many people want to thank these two Moms and I couldn’t selfishly thank them just myself,” Pearl said. “Mother’s Day just seemed like the perfect time. I had thought about how to get them together and finally in January I got the courage to ask both of them if we did an event if they would be willing to come. When they said yes, I decided to capitalize on it and try to make it a fundraiser for B+ as well, and sign people up to be tested.”

Alexandra’s life-saving donor, Catarina Lindstrom, 40, hails from Stockholm, Sweden. She and her husband, Fredrik, have two daughters, Ella (5 ½) and Klara (almost 4).

“This is my first visit to the states, and I really love being here,” said Lindstrom, whose family is temporarily living in Dallas, Texas, for her husband’s job.

Lindstrom said her own children mean the world to her.

“I love my kids,” Lindstrom said. “They are so beautiful, so smart, so lively, and we have so much fun. To be a stay-at-home-mom while being here is a gift. If we wouldn’t have gone abroad, I would have gone to work every day back home, and the kids would have gone to day school. So, having the possibility to stay at home with some of the most important people in my life is really great.”

Now, having another “daughter” makes Lindstrom proud.

“In November, I got a letter from the Swedish bone marrow register telling me I was asked to reveal my name and address by the girl who got my bone marrow,” Lindstrom said. “I did that, and not long after that I got a letter from Mrs. Pearl. She had enclosed the family’s Christmas card with a photo of the children. Mrs. Pearl was thanking me for donating, and she started to tell me their story. It was overwhelming, and I cried for a long time.”

Lindstrom actually was tested before she had children.

“I was donating blood at the hospital in Uppsala, a city just north of Stockholm, where I was studying at the time,” Lindstrom said. “At the hospital, I once read a brochure from the Swedish bone marrow register, and I signed up without hesitation.”

That was in 1996. “Five years letter, I received a letter telling me that a little girl might need my bone marrow to survive, and I was asked to come and undergo extended testing of my blood and my health,” Lindstrom said. “I knew it was a little girl, and that she wouldn’t survive without new bone marrow. When I knew I was a perfect match, of course, I was very happy for her. At the time of the transplant I had no children, I was not a mom. But now, having children, being a parent, a mom, I can better understand the whole story, their story. It’s really overwhelming as a parent.”

So overwhelming that when she finally talked to the Pearls the first time, she was speechless.

“The first time I called Mrs. Pearl, I almost forgot to breathe during the conversation,” Lindstrom said. “I could hardly find the words and I think I was stammering too. Later on, I called the little girl, Alexandra, when she turned 13, and that was emotional, and again hard to find words.”

Lindstrom has remained “in touch” with the family via email and also their Web site.

“I often visit their Web site, and I read the blog,” Lindstrom said. “I love them all, even if we haven’t met yet. I think it is an amazing family, and I am really honored to be a part of their story. When I got the whole story, I wanted to call everyone; all my friends, and all their friends, and theirs as well. I wanted the world to know everything, so everyone can help make a difference in any way.”

Lindstrom admits to being nervous about finally meeting the family.

“I am nervous, excited and anxious to meet all of them,” Lindstrom said. “I am terrified but it will be great. I think it will be emotional. In tough situations you perform better, and if your kids are involved, I think you somehow get the strength to move mountains. I’m really honored to be a part of the Pearls’ story. I’m so glad my bone marrow was a perfect match and that it worked out all right.”

But Lindstrom says she does not deserve the praise.

“Please, don’t make me a hero,” Lindstrom said. “The little girl is the true hero in this. I don’t see it that I saved the little girl. She just got some of my bone marrow. I think she did the whole work by herself, with the help of her family and friends being there for her. I’m touched. I still cry when I read the Pearls’ story, gallons of tears, but I can’t say that I saved her. I’m just an ordinary person, trying to do good in the world. She lives with my bone marrow and I think that is fantastic. I am so happy, and so proud.”

As is Annette Locklear, Matthew’s donor, who is not a perfect match per se, but perfect enough.

Compared to what Locklear said she is facing this weekend, the transplant was easy. ”I’ve never even been on a plane,” Locklear said. “I don’t want to be in the role of celebrity or hero. I’m just from a small area in the country. We don’t lean on each other and see the support here like they have shown to the Pearl family.”

Locklear, 30, is from Robertson County in North Carolina. Her husband, Nick, is a high school history teacher. Locklear is a pre-kindergarten assistant at the local elementary school and is going to school to become a special education teacher. Their oldest son, Connor turned 4 on April 29. Another blessing came Locklear’s way when she found out that she was going to be a mom again. She found out she was pregnant with Caden about a month after she donated her bone marrow to Matthew.

“At the time, they kept testing me and I was testing myself to make sure I was not pregnant,” Locklear said. “But I think I had to have been pregnant in July, even though all the tests were negative. It was just too early to tell I guess. I found out I was pregnant a month and a week after the transplant.”

Their younger son, Caden, 1, was born on April 6 – which, ironically, is the same day as Alexandra Pearl’s birthday. In addition, Locklear originally wanted to name her first son Matthew.

Like Lindstrom, Locklear is humble about her life-saving effort.

“They were having a blood drive when I was in high school,” Locklear said. “I was a senior and I donated blood. When I donated in high school, they said I could be a match someday. I was young and at the time I wasn’t thinking about actually saving a life. What really affects you is when you have children of your own.”

Locklear said that despite the fact she fears hospital settings, she was willing to be a donor.

“I hate hospitals and I hate to be put to sleep but every time I looked at my son, Connor, I said, ‘how could I not do it?’ Connor was 2 at the time,” said Locklear, who did have some temporary complications post-surgery. “When I woke up, I was frightened because I couldn’t see. I thought something had gone wrong. But it was a side effect of the drugs and eventually it was OK. Also, because I was so thin (120 pounds, 5-foot-6), they had to press down further on my pelvic area to get the marrow out. But it was nothing that Ibuprofen couldn’t cure. A week later we were in Florida so it was a quick recovery.”

Locklear said that knowing now what the whole procedure entails, she wishes other people would be more willing to be tested to potentially become a donor.

Locklear said that for several months, she called the local bone marrow registry to see if they had any news about her still-anonymous recipient.

“I would call the lady at the National Bone Marrow program, Ann Webb, and ask if she had heard anything,” Locklear said. “She kept saying that they hadn’t heard anything so things were positive as far as they knew. But I later found out that Matthew had a tough time with it and was in the hospital for more than 100 days.”

Then Locklear received the news she wanted, on her 30th birthday, Nov. 25, 2007.

“On my birthday, I got the first email from Miss Diane Pearl,” Locklear said. “Someone from the donor program had called me about two weeks before that to get my contact information. I don’t know if it was coincidental or not that the email actually came on my 30th birthday but I checked my email that night before I went to bed and it was a nice surprise. It was very, very unexpected at that time.”

Locklear said that Matthew sent her a Christmas card with a gift card enclosed.

“I got very teary-eyed,” Locklear said.

Locklear said that while she is nervous about meeting the Pearls, she also is excited. And is bringing lots of Kleenex.

“I am so nervous because I don’t know what to expect,” Locklear said. “They are truly an amazing, wonderful family. I am anxious, scared and nervous – and lots of tears will be shed. It doesn’t take much to make me cry anyway. I’m very excited to meet them and I know they are very excited to meet us.”

But coming to a place like St. Louis is a bit intimidating to Locklear.

I never thought I’d be in this situation,” Locklear said. “I’ve seen the news coverage where people were lined up to donate to help this family and saw that when Matthew came home, the streets were filled with people to welcome him home. You don’t find that kind of thing here (in Robertson County). People don’t come out and help and support each other like that. I am going to be so overwhelmed to see for myself the kind of support that this family has received.”

And while the Pearls admire Locklear for her courage, Locklear said she has nothing but admiration for the Pearls.

“I don’t know any other family that can endure what they have and come out on top,” Locklear said. “To me they are truly an amazing family. I don’t know anyone who has the strength that they do. The Lord put me in their path to help them. I did it because they needed the help. I would hope that if I was ever in a similar situation that someone would help me, too.”

Alex and Matt

And of course, the children are ecstatic to meet their donors.

“The kids think it is really cool that Alex’s donor has two girls and Matt’s donor has two boys,” Diane Pearl said. “They say that because Catarina gave for a girl, she had two girls, and because Annette gave for a boy, she had two boys.”

Pearl said that Alex and Matt have a lot of questions for their donors. But they are pretty simple questions.

“They are interested in what their donors like to eat because both of their taste buds and food choices changed dramatically after transplant,” Pearl said. “They also want to know about their donors’ hair and hair color. They are inquisitive to the point of wanting to know about having someone else’s DNA because they have been studying DNA in school. They feel like they are related, which they are now. They asked me what to call them and I told them, ‘they are your friends.’ I hope that we can have a great bond with them and their families.”

And Pearl said that despite the outer strength the family shows, they have had numerous and major ups and downs.

“I’ve been on the biggest roller coaster of my life and I don’t like it,” Pearl said. “I’m normal, I get mad and angry and sad and upset. The only thing that’s different is that when life is falling apart, I can sit back, sort it out and figure it out. I can take a deep breath and know I can handle it. I don’t know how people do this without faith in God. By the grace of God we do get through this.”

And Pearl is reminded every day that her children still have a long road ahead of them. While the survival rate for FA children post-transplant was just 17 percent in 1995, those odds have increased to 70-80 percent survival rates. Still, the average age that an FA child reaches is 22 with the ever-lingering problems of potential cancer.

“I am so proud of them,” Pearl said. “Alex just turned 13 at the beginning of April and I’m so proud of her. Catarina called her on her 13th birthday and Alex said, ‘thank you for donating and saving my life’ and I said ‘thank you for birthdays No. 7, 8, 9, 10, 11, 12 and especially 13.’ There really are no words. It’s amazing to see what they’ve accomplished in the past seven years of hard medical time – and really 13 years for Alex because we have been dealing with this since she was born and didn’t know what was going on yet.”

That is why Pearl said she hopes that this Mother’s Day and every day, that children and parents alike will honor each other with all of their hearts.

“My wish for everybody is to think of their own mothers and thank them and love them and cherish them. That is my hope and message for everyone,” Pearl said. “I don’t want any mom to go through what I’ve gone through. Your life is turned upside-down. It affects everything in your life – your marriage, your family, your well-being – your stress is just off the charts.”

Still, Pearl said that everyone can learn a big lesson from what they have endured.

“Sometimes it is difficult to see our blessings,” Pearl said. “The lesson I have learned is to like the path that you are on, whether it is a good or bad path. You have to make the most of it. I want to be smart enough to feel and see the blessings when they happen. I don’t go shopping, I don’t need material things. What I do now as a mom doesn’t pay much. Our pre-transplant medical costs were $250,000; the transplants exceed $2.5 million. But meeting and hugging their life-saving donors is priceless. It’s also priceless to have both of my children in their beds at night. There is no price for that.”

Alex and Matt wrote cards to their donors and will read these at the event on Saturday night.

Dear Annette,

I would not be here today if it weren’t for you.

You saved my life.

There is no way to tell you how that feels.

Just saying thank you that is not enough.

I hope it did not hurt you too much to give your bone marrow for me.

My transplant was very hard and hurt a lot.

I am excited to meet you this Mother’s Day.

You gave me life just like my Mom.

Your new son,

Matt

Dear Catarina,

My words cannot describe how I really feel.

Thank you SO much for being so kind to save my life.

I think it is amazing you are my perfect match and please know that I will always love you very much.

I can’t wait to meet you on this Mother’s Day and give you a giant hug.

It will be the most special day ever to have both of my moms together who gave me life.

Your loving friend,

Alexandra

Resources

To learn more about the Pearls, visit alexandmatt.com.

• To learn more about Fanconi Anemia, visit fanconi.org.
• To learn more about the National Marrow Donor Program, the national Thanks Mom campaign, and to become a donor, visit marrow.org.
• Call Heart of America at 1-800-366-6710 to set up a bone marrow drive.

A trust account also has been set up for the Pearl family’s medical and other expenses. Donations may be sent to:

Alex and Matt Pearl

Regions Bank

701 Market Street

St. Louis, MO 63101

Account No.: 6900069977