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Boys' rare disorder prompts mother's crusade

CINCINNATI (Angela Ingram) -- Becky Kremer is a doting mother; dedicating her life to her three sons.
   
She's at Children's Hospital with her youngest, Jacob.  The 3-year-old has a rare genetic disorder. 

"It is called ATRX and they are delayed in all areas," Becky explained.
   
The disorder affects males only though females can be carriers.  Boys like Jacob with ATRX syndrome have a wide range of medical and developmental issues; including the ability to speak.

Becky said, "He had problems at birth.  So he went into the NIC-U and they noticed he had a cleft palate.  So that led to feeding difficulties and then more testing came along because of his older brother."
   
When Becky's first son, Tommy, was a baby the family noticed developmental delays in him.  They came to Children's for a diagnosis but the genetics test that identifies ATRX wasn't available.  But by the time Jacob came along, it was. 

"And that's how we found out the boys' diagnosis is basically because Jacob was born.  I cried a lot because why did this happen to me?  I felt like I did something wrong," Becky told Local 12.
   
In time, Becky bonded with a team of professionals at Children's.

Clinical nurse specialist, Tricia Bender, said, "So one of the things that Becky told me in the beginning is, 'I already have a son who has so many other medical concerns.  I can't do this again.'  So then what do we do?  We developed a plan that met both Jacob and Tommy's needs."
   
Becky not only deals with their constant care, she's also raised $55,000 for a handicapped-accessible vehicle.  And she's now an advocate for children with disabilities.

"Now my passion is to help other families like us.  So they do not go through a bumpy path," Becky said.

After successfully raising $55,000 for her own sons, Becky Kremer wants to raise money and donate it this year to another child with disabilities.

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