TERRE HAUTE, Ind. (WTHI) - 6-year-old Justice Spencer is known for her long locks and bubbly personality.
"She's little but she's definitely mighty, and has a huge personality and a personality all her own and that's just what makes Justice, Justice, she doesn't like to be called little," Mother Sarah Hamilton said.
Two months ago, the family's world was turned upside down, when Justice was diagnosed with Fanconi anemia, a rare genetic defect.
"There's only a thousand people in the world with this disease, so it's kind of hard to understand the emotional part of it and as a mother, what it's like to you know, want your child to be perfect, and they have something that they're going to have for the rest of their life and how to cope with that," Hamilton said.
Throughout her life, the disease has caused her to have a weak immune system, a problem that's now a full time job for her mother to keep track of.
"If she gets sick, it's not just going to be a normal trip to the hospital or a normal doctor visit, she doesn't even have doctors here anymore. She has direct orders form Riley," she said.
Justice needs a life-saving stem cell transplant to stop the disease from turning into leukemia.
To do that, she needs one to two more bone marrow matches from a donor.
The National Marrow Donor Program says 10 million people are on the registry, but many like Justice still go with out their match.
Support from the community has changed the family.
"It's just been incredible how much support and love and how much everybody's come together and just appreciate those little moments that we didn't have before or maybe took for granted before."
They do everything they can for a long, happy life for Justice.
"Her future's bright and positive and we're going to make sure of that."
Doctors say Justice has the least severe form of the disease.
Justice plans on donating her hair to Locks of Love.
The National Marrow Donor Program says there are three ways you can help:
Join the Be The Match registry .
To make a tax-deductible donation to help cover the cost of each new member, make checks payable to Be The Match and send to 3450 N. Meridian Street, Indianapolis, IN 46208.
Credit card donations are accepted at: www.bethematchfoundation.org/goto/bethematchindiana
To host a drive or volunteer, please call (317) 916-5110 or email firstname.lastname@example.org.
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