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Trinidad girl gets treatment at Geisinger — Healthwatch 16

A young girl from Trinidad has been getting treatment at Geisinger for most of her life after doctors diagnosed the child with Jacobsen Syndrome.

LEWISBURG, Pa. — When 7-year-old Amara Baker laughs, it's hard not to smile. 

Amara's family was not sure they would ever get to hear that laugh. The little girl was very sick when she was born in Trinidad in 2015. 

"She had two pulmonary hemorrhages where they basically told us they've done all they can and they don't know what it is, so just pray," said Stacy-Ann La Roche, Amara's mom.

Stacy-Ann La Roche is Amara's mom. She has family in the Milton area. 

In 2016 Stacy-Ann made an appointment for Amara at Geisinger's Autism and Developmental Medicine Institute near Lewisburg.

"She wanted to figure out what was wrong with her daughter. She knew there had to be something wrong with her. Her development was not on target," said Barbara Haas-Givler, director of Education & Behavior Outreach.

Amara had a series of appointments at Geisinger. In 2016 she was diagnosed with Jacobsen Syndrome, which is a rare genetic condition that can cause respiratory issues, bleeding disorders, and heart defects. 

Amara started coming to Geisinger yearly, and doctors here would give the family a developmental plan for doctors in Trinidad.

"It's not like a time frame we have for other patients who are local. If they get into audiology or ENT next month, it's not as big of a deal. In this case, we thought we had a very narrow window," said Haas-Givler.

Barbara Haas-Givler is the Director of Education and Behavioral Outreach for the Autism Center. 

She says Trinidad does not have specialized genetic testing. In fact, Amara is the only registered person in Trinidad with Jacobsen Syndrome.

"I feel confident that they have the experience to deal with her because in dealing with congenital heart disease and all the complications it can be dealing with life and death," said La Roche.

Amara is back in central Pennsylvania for the first time since the pandemic.  

"She's really picking up on the use of this speech-generating device. Mom has already been using it at home, and then when she brings it back to Trinidad, she'll be able to teach others how to use it with her," said Haas-Givler. 

Amara's family says they feel lucky to be able to see specialists at Geisinger.

See more Healthwatch 16 stories on YouTube. 

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