Rare Disease Day: Alayah's story - KPLC 7 News, Lake Charles, Louisiana

Rare Disease Day: Alayah's story

Today is Rare Disease Day: a move to increase awareness about serious afflictions with which only a few struggle.

To mark the occasion, Brentwood Elementary School honored a five year old girl named Alayah, who, is a little girl who's made a big impression on those who know her.

Her mom, Nancy Frank, gets choked up as she describes Alayah's bravery. "She's an angel.  She complains never.  Hospital stays, she's worried about me, if I'm comfortable, if I have a pillow to lay down.   And she's sick.  Barely can breathe.  That's what kind of person she is," said Frank.

Alayah has a rare, life threatening disease called MMA or methylmalonic acidosis which requires special diet and treatment.

"She has to have a controlled diet which is limited protein.  She takes medication daily including an injection nightly.  If it's uncontrolled, if it's not managed  ammonia will build up in her system.  CO2, the oxygen in her blood will go down, eventually causing lethargy and coma," said Frank.

Nancy, says she's been through a lot for someone only five years old. "She's five and has been hospitalized over ten times," said Frank.

Yet, Alayah enjoys life, especially when she's in her play house, a gift from Dreams Come True, where she likes to dress up like her favorite animated character.

We listen in as Mother and daughter talk about what she enjoys.

Nancy:  Doc McStuffins?  Alayah:  Doc McStuffins. Nancy: What does she do?  Alayah:  (Gives)a shot.  Nancy:  She does, she does. She (Alayah) gives her babies and her dolls and her bears, she does their blood pressure  What else do you do?  Alayah:  Check their heart.   Nancy:  Check their hearts, that's right.

Alayah has touched so many hearts at Brentwood Elementary, where she's in kindergarten. Some students and teachers adorned t-shirts and jeans to support her.

Elijah Frank is her twin brother. "I want her to get out of the hospital," he said.  "And stay out."

Ashunti  Gray,  is one of Alayah's closest friends. "I would always walk her down to her Pre-K class and she would always want me to hold her and she's a sweet little girl," said Gray.

Another little classmate comes up saying how much he loves Alayah.

While Alayah is a student at Brentwood, in many ways she seems to be the teacher.

"She's very compassionate and sensitive to the other students in class as well.   IF someone is not feeling well, they come in maybe sick, she will literally get up and put her hand on their arm.  I know that she feels pain at times, but she's also capable of comforting other kids at the same time," said her teacher Sharelle Mackin.

Nancy says MMA affects only one in between 50,000 and 100,000 people.  Alayah was diagnosed at birth.  She says the show of support means everything.

"It means the world to us.  It tells us that she has a family outside of our household, outside of our family that cares for her and love her so much," said Frank.

And that love shows, especially on this day to support those with rare diseases.

For more information on methylmalonic acidosis click here.  For more on newborn screening click here.

 Dreams Come True is the group that helped grant Alayah's wish.

Copyright 2014 KPLC All rights reserved

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