Amarillo mother raises awareness for Wolf-Hirschhron syndrome - KFDA - NewsChannel 10 / Amarillo News, Weather, Sports

Amarillo mother raises awareness for Wolf-Hirschhron syndrome

Source: KFDA Source: KFDA
Source: KFDA Source: KFDA
Source: KFDA Source: KFDA
Source: KFDA Source: KFDA
Lindsey Carrier / Source: KFDA Lindsey Carrier / Source: KFDA

One local mother is raising awareness for a rare chromosome deficiency, after her 6-month-old daughter was diagnosed with Wolf-Hirschhron syndrome. 

Megan Maxwell was born missing a piece of her fourth chromosome which caused the unique disorder. 

"She already has it so difficult as it is and I believe raising awareness would help other people understand because not everyone knows about it," Megan's mother Lindsey Carrier said."Getting any word out there about her could help improve her quality of life."

This condition affects many parts of her body including her kidneys, digestive system, respiratory system, eyes and heart.

Local doctors said the syndrome is not inherited and it affects 1 out every 50,000 children. 

Megan is a part of a national data base which her mother said helps with the research studies.

For Carrier and her daughter, their lifestyle consists of doctor appointments, patience and hope.

"Usually I have at least one doctor's appointment a week," Carrier said. "This week we have three or four so it's pretty hectic. Other than that she is a really good baby. She usually lets me sleep. She is very laid back, but she is tough because she has to put up with all of the test."

Megan's doctor, Sirlatcha Alapati, said Megan is not the only child in the Texas Panhandle with this syndrome.

Five other children were also born missing their fourth chromosome, and although they share the same condition each child has unique challenges. 

"The main challenge for Megan will be the seizures and the growth retardation," said Pediatric Cardiologist for TTUHSC, Sirlatcha Alapati. "She has to be working regularly with physical therapy, speech therapy and occupational therapy and we have to watch her mental development very closely as well."

Carrier said she will continue to speak about Wolf-Hirschhorn and raise awareness for her daughter.

She would also like to connect with other families whose children face the same syndrome as her daughter.

Copyright 2017 KFDA. All rights reserved.

Powered by Frankly