Bone Marrow Failure Syndrome: Local girl stays positive
FAIRMONT — We may not ever understand all the trials and struggles of life, but when they come we would do well to reflect on our children and how they react to such circumstances. Essence Leach, a third grader at Trimont Elementary, has managed to keep an upbeat attitude and a smile on her face as she deals with the difficulties of bone marrow failure syndrome.
Her mother, Jaime Urban, shares the story of Essence’s struggle, which began just a short time ago.
“We took her in three days after Christmas to have her blood work checked because we noticed that she was running into things and she would get these giant bruises,” she said. “She would also get these red spots called petechiae anywhere her clothing would touch or if she would rub her skin the wrong way. At that point her platelet level was 6,000 and they should be between 150,000 and 600,000.”
Urban states that Essence was taken to Rochester, where it was initially thought she had a condition known as ITP (Idiopathic thrombocytopenic purpura), in which the immune system mistakenly attacks blood platelets. Later tests revealed that she actually had a type of bone marrow failure syndrome, in which the bone marrow quits producing platelets.
“Her white blood cell counts are very low and her red blood cells are too large, and everything in the blood is just not quite right,” Urban stated. “The doctor told us that this can go two different ways. It can go to where her bone marrow just stops working and she has to have a bone marrow transplant, or it can veer off into symptoms of leukemia. But there’s no real way to tell right now.
“They are doing some non-genetic testing right now, but we will meet with a geneticist and within the next three months they’ll check her bone marrow again and see what her XY cells are made up of. Hopefully that will tell them what our path is, but ultimately she’ll have to have a bone marrow transplant.”
When asked about current treatment, Urban stated that Essence has been seen twice a week for blood draws in Fairmont, and is also going to the children’s hospital for platelet transfusions to keep her levels high.
“If she were to slip and fall and hit her head she could have her brain bleed because her blood does not clot. Or even a little cut or bloody nose could bleed for a long time. So she can’t do the things that normal kids can do.”
Urban shared that Essence is currently on the Martin County Magic gymnastics team, but is unable to participate.
“It’s a big bummer for her,” said Urban. “She can’t participate in gym at school and because her white blood cell count is low she is susceptible to catching anything going around, so she has missed a lot of school. She just hasn’t been feeling the greatest, and she’s very tired.”
Though she cannot participate, her gymnastics team recently honored her with a comfort basket and tip jar at recent meets. Urban stated they are extremely grateful for the help and support of family and friends who have donated and praying for them.
“The put out a tip jar and raised $127 and the other time it was $91 to go toward anything that we need. We also got a couple of gas gift cards from her great grandmother and then her aunt on her birth-father’s side. People have been praying for her, and sending her cards.
“My own mother, Sharon Scheff, has been huge in helping with all of this. From helping hold her hand for scary blood draws and IV’s to coming with and driving us to appointments, she has been wonderful.”
Urban also shared Essence’s highlights include seeing her friends whenever she gets the opportunity, and notes that she is amazed at her daughter’s handling of the situation.
“She amazes me everyday with everything she is going through and she can still keep a positive attitude,” said Urban. She’s still pretty outgoing, as much as she can be.
“We just really want to encourage people to donate blood, because the platelets she’s been getting wouldn’t be possible without donors. Even with bone marrow donations, even though someone might not be a match for her they could be put on the national registry and could help somebody.”