Mother creates foundation in daughter’s name who died of rare disease

Socorro Herrera lost her daughter on March 31 to a rare disease detected too late.

Today, Herrera is coping with her loss by forming a foundation in the name of the daughter she lost too soon.

Aileen Burkett, 13, was diagnosed with Hemophagocytic Lymphohistiocystosis or HLH, the day before she died.

Those with HLH have immune systems that do not work normally.

The immune system’s cells don’t work properly to destroy damaged cells as they should. The immune system becomes over stimulated and then begins to damage one’s tissues and organs.

“She was a full-of-life girl,” Herrera said.

She added Aileen athletic and passionate about volleyball. She was a setter for El Paso Sol volleyball team.

The team continues its season without Aileen, but will never forget the impact she made on the team.

The girls wear a number 17 on their jerseys and bracelets with her name.

“She was my best friend and it was very hard to find out that she had passed on,” said Serena Gutierrez.

Herrera said she noticed changes in her daughter’s physical health in January.

She said Aileen became easily fatigued and the joints in her hands ached. Herrera thought it was likely because her daughter was going through puberty.

Within a few weeks, Aileen’s symptoms worsened with skin rashes, prolonged fever, bruising and swollen lymph nodes.

Herrera took Aileen to more than one doctor, who all ran several tests with different diagnoses.

Aileen took a turn for the worse the last week of March.

Herrera said doctors recommended Aileen undergo chemotherapy to suppress her immune system. Aileen immediately needed surgery because her liver was expanding and no allowing her breathe.

Final tests revealed Aileen had HLH which Herrera said ultimately destroyed her liver and spleen.

According to the Johns Hopkins Medicine website, HLH can be inherited or acquired. Herrera believes it may have been hereditary, but it was not caught in time.

If drug treatments do not work, a stem cell transplant is needed. Stem cell transplant can cure HLH in most cases.

The Aileen Burkett HLH Foundation is still in the works. Herrera said it’s a way to cope with her loss and make parents aware.

“In this world, you are here to serve,” Herrera said.

“I want people to know about this disease so they don’t go through this.”

If you’d like to know more about the Aileen Burkett HLH Foundation, call (915) 346-7631.