Local, adopted 3-year-old in desperate need of bone marrow donor

Maelin-Kate was diagnosed with a rare,genetic blood disease shortly after she was brought home to Madison.

Posted: Mar. 2, 2018 7:41 AM
Updated: Mar. 5, 2018 7:38 AM

A 3-year-old adopted from China by a local family and shortly after, is diagnosed with a rare blood disease. 

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"Not that its not scary because it really is and not that its not time sensitive because it really is," said Megan Carlson.

Now, the family is looking for a bone marrow match to save their daughter's life.

The Carlson family adopted 3-year-old Maelin-Kate in September 2017 and brought her home to Madison.

The family knew their daughter had hip dysplasia, but during treatment for that, she was also diagnosed with a rare, genetic blood disorder.

"Maelin is the single most joyful person I have ever met in my life," said Megan, Maelin-Kate's mom.

That's how Megan and Paul Carlson describe their 3-year-old daughter, Maelin-Kate. 

She was scheduled for hip dysplasia surgery shortly after she came home to Madison just a few months ago.

During pre-surgery lab work, doctors discovered something bigger.

"She looked at Maelin, looked at her blood work, looked at some of her physical indicators and said 'I really think she has this genetic disorder called Fanconi Anemia and we need to do a really specific test that needs to be sent off to Boston, same day, it needs to get there by the end of the day, and we can determine if this is what she has,' and sure enough," said Megan.

Fanconi Anemia is a genetic disease that affects bone marrow. It results in the decreased production of blood cells. 

The only long-term cure for the disease is a bone marrow transplant. If Maelin-Kate doesn't find a marrow match, Fanconi Anemia can turn into a different disease. 

"Eventually her Fanconi Anemia will turn into Leukemia, if she does not receive a bone marrow transplant," added Megan.

That's why the Carlson's are looking for a bone marrow donor for Maelin-Kate.

"Other treatments are just kind of band-aids they can put on while we wait," said Megan.

But bone marrow matching and donation doesn't come easy. It's based on finding a donor who shares similar DNA and ethnicity. 

"We just always assumed if something tragic happened in our own family, that you'd find a family member that could be the match for another family member and everything would be fine. However that's just not the case," said Megan.

Many families who adopt turn to the foundation "Be The Match" for help.

Its a national marrow donor program that has the largest and most diverse marrow registry. 

The foundation's mission is to work every day to save lives through transplants. 

Maelin-Kate's dad joined the registry after finding out about her diagnosis. 

He describes the process painless and easy.

"Do a survey, questionnaire, basic health information. They'll send you a packet a few days later, you just do two swabs, one for each cheek, you send it back in and its done," said Paul Carlson.

Although the Carlson family hopes everyday to find a match for Maelin-Kate, they also want to spread the message of how big the need is for marrow donors nationwide. 

"We just really feel like this is where we're supposed to be and what we're supposed to be doing and we feel like its our duty to get as many people as we can on the registry, not only for her, but for other people. Because she's not the only one that needs a bone marrow transplant," added Megan.

If you are interested in joining the "Be The Match" marrow registry, visit  https://join.bethematch.org/Maelin18

Coming up on March 6th, nursing students from UAH will host a local bone marrow donor drive. It will be held at the UAH Charger Union on camps. It starts from 10 a.m. and ends at 3 p.m.

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