Are you Isaac’s cure?

Posted April 16th, 2015 by Be The Match and filed in News
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For the love of Isaac. . .  

The Colemans-122 (2)Mindy and her husband Daniel Coleman are a creative, young couple living in Huntersville, North Carolina. He works in advertising. She makes leather baby moccasins in honor of her Native American heritage, and sells them on Etsy.

In 2011, the combination of their genes produced Isaac, a fragile and pensive-eyed son who inherited a rare disorder: Fanconi’s anemia (FA)

The Colemans live a different reality from their millennial friends who still have the option of gliding through life. As Mindy put it, “This journey is one we didn’t expect.” In fact, it was the worst thing they could imagine.

And yet, says Mindy, “There is a bitter sweetness to life, a beautiful kind of joy deep down in my bones that wasn’t there before.” Before Isaac.

Fanconi’s anemia affects many systems of the body. Patients can develop leukemia, bone marrow failure, tumors and other serious conditions. The average patient lives to be 25 and there are only about 1,000 documented cases of the disease in medical literature.

About 5 months into the pregnancy, when many expectant couples are choosing names and nursery colors, Mindy and Daniel began preparing for the worst. Mindy’s ultrasound showed swelling on the baby’s brain and doctors were unsure of his condition.

When Isaac was born on October 3, 2011, he weighed a little over 3 pounds. Soon after birth, he underwent several surgeries for a brain shunt and a colostomy – the first of many. “We’ve lost count of his surgeries,” said Mindy. He is now under the care of 12 doctors.

Today, Isaac is a handsome, dark-haired 3-year-old who weighs just 14 pounds—the average weight of a 3-month-old boy. He is tiny in stature, but big on attitude. He wears a hearing aid, walks with assistance, and now has a thumb, thanks to surgery. Music, kites and his new preschool enthrall him. He sneaks food he doesn’t like to his dog, Maggie.

Isaac’s parents know what his future holds. Most FA patients experience complete bone marrow failure between the ages of 3 and 12, so Isaac’s clock is ticking.

During the past year, Isaac’s platelet quality has declined significantly—a precursor to bone marrow failure. Doctors believe he will need a transplant by the end of the year. The Colemans hope they can The Colemans-10find a marrow donor in time through Be The Match Registry.

But finding a close match will be difficult because of Isaac’s partial Native American heritage: fewer donors represent that genetic population. Patients are most likely to match someone of their own race or ethnicity, and a genetically close match will greatly improve Isaac’s chances for a successful transplant. So far, search results haven’t been encouraging.

In spite of the heart-wrenching worry, Mindy is inspired by several children she knows who are doing well after bone marrow transplants. “Be The Match is doing all it can to get more donors—we’re incredibly hopeful,” she says.

Meanwhile, they will wait, and hope and love their little boy with the pensive brown eyes. Isaac, a name that means “he laughs.”

Join the marrow donor registry and be the cure for patients like Isaac.

Give to deliver the cure to more blood disease patients. 

23 Responses to “Are you Isaac’s cure?”

  1. Barbara B says:

    How can one help and get tested in 33179 Miami, Florida?

    Barbara

    • admin says:

      Hi Barbara- Thank you for your support! You can join Be The Match Registry online at join.BeTheMatch.org/Isaac and we will send you a registration kit in the mail.
      Thank you!

  2. Isabelle P says:

    We live in France and we just found a donor for my 15 years old daughter (acute leukemia) in United States !
    She has a mixed heritage (french/ tunisian/ scottish) so it was a bit difficult to find a match but they made it !
    So I hope you’ll find one soon too !

    Isabelle

  3. Bernice R says:

    I’ve been on the registry for a few years and am Native American!, not sure how matches are made but am ready and willing to help!

  4. Amanda says:

    I pray you find a match.. I myself have two children who have Fanconi Anemia that are half siblings my oldest son received his unrelated bone marrow when he was 7 he will be 20 In November. My daughter who is 4 received her unrelated bone marrow April 15th and is doing really well we hope to be out of the hospital soon. We are at University of Minnesota children’s hospital the best place in the world for FA patients.
    Good Luck
    Amanda

  5. Janna says:

    I have followed your beautiful blog for a while now.
    I’m registered as a donor, and it would be so amazing to be your match. Please, if you haven’t already pledged to BE THE MATCH- do it now. It won’t hurt you as much as it will hurt this family to lose their sweet boy.

  6. Matt Firmin says:

    Hello There

    im from New Zealand with a young boy with Fa also I I could be tested some how along with my wife we will do so if it helps in anyway

    take care

    Matt, Kaylee Firmin

  7. Laurie Gast says:

    I am a registered donor and want to help!!!!! I am in VA!!

  8. Randi says:

    Hi I’ve been on the registry for a while. How do they contact you if you are a possible match?

    • Lisa says:

      I got an email from the NBMR saying that I was a potential match with a link to respond with more contact information and to let them know if I was still interested in further testing to determine if I was a match. Just make sure they have your current contact information. I just happened to be checking my email junk folder when I saw the email.

  9. Mandy says:

    I am in the donor list but am not sure how that is checked. I have Native American ancestors on one side as well as Scottish…would be happy to be retested to see if I could be a match! We live in Charlotte…so close.

  10. shannon parker says:

    I have native american and western Europe ancestory…I would love to help if I’m a match.

  11. Melissa Castillo says:

    I don’t keep how they do the Match but I Suggest looking into hispanics. Most of us have indigenous blood, mixed with European worth a shot.

  12. Lori Harris says:

    i have Cherokee Indian heritage. I am also in the donor registry. How can I find out if I am a match

  13. Maris says:

    If you are already in the registry, there isn’t anything to do. Your bone marrow type will be checked against this little guy’s automatically. But, you need to make sure you keep your contact information updated with BetheMatch so they can contact you. Also, encourage all of your relatives or anyone you know that has any mixed sort of heritage, especially in this case, Native American, to register with the program by sending away for a testing kit or attending a drive in their area. The more different types of genetic background that we can get into the registry, the better chances of a match for Isaac and all people who need transplants.

  14. dana n jarrett says:

    I would def donate my bone marrow to him, I am also of native american decent. please send me what i need to to get started.
    Thank you so much

  15. Whitney says:

    Hi, I live in Cornelius and have Native American heritage. Please let me know what I can do to help!

  16. Brittany says:

    How do I get a match test?

    • admin says:

      Hi Brittany!

      In order to sign up for the Be The Match registry to become a potential donor, you can click here: https://join.bethematch.org/. After you fill out your information, a testing kit will be sent to you.

      Thank you so much for your support!
      Be The Match

  17. PATRICK M GOHL says:

    Hi,
    I am north American Indian(Quebec, Canada ) and european bloodlines B+ type.I live in the Metrpolitan Detroit ,MI. Area, if a potential match ,where would I get tested ?

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