Brave teenage girl fights rare disease: Is there a problem?

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At age 13, Joaida Morejon is determined to beat the disease she has lived with for most of her life.

Her defiant attitude is apparent, especially to those who find it hard to ignore her unusual appearance.

Joaida, who despite her age looks like a seven-year-old girl, suffers from blue rubber bleb nevus syndrome, a rare disease characterized by bleeding of the arteries and veins.  It has given her a huge, protruding tongue.

“When children her age stare at her due to her physical defect, she would raise her fist to show them that she is in a fighting mood,” her mother, Maria Fe, told the Inquirer. To older people who find it hard to look away, Joaida would ask them, “Ano ba problema n’yo (Is there a problem)?”

The disease makes regular functions, such as bowel movement, difficult.  Excretions are always accompanied by loss of blood, making weekly transfusions a must. For this, Maria Fe said they spend P7,000 a week, a great strain on the family expenses considering that there is only one breadwinner in the family, her husband Rex, who works as a driver for a home appliance manufacturer.

Her daughter’s condition has also made schooling impossible as she needs to go regularly for checkups at Philippine Children’s Medical Center, she added.

“But I taught her how to read and write that is why she can send text messages. Still, she asks me when, if ever, we will allow her to go to school,” she said.

Those who want to help Joaida can contact the family at 0920-3066765 and 0915-5947945. Donations can be deposited in Maria Fe Morejon’s PSBank  account with account number 089111029728.

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