Janalen and Rocky: Prader-Willis Syndrome, Cystic Fibrosis, Adoption, and Down Syndrome

Sep 4, 2019 | Diagnosis, Stories | 0 comments

Janalen and Rocky were shocked to learn their first child was born with cystic fibrosis. Little did they know, their life with children who have disabilities was about to unfold.  Their second child was also diagnosed with cystic fibrosis. They eventually adopted five children, one of which is a girl from China who has Down syndrome.

A Big Unique Loving Family 

The Beginning of a Disability Life

When Katy was born, Janalen and Rocky knew something was wrong.  Janalen said, “She couldn’t suck, she never cried. We found out she had cystic fibrosis really quickly.”  Katy’s older sister also has cystic fibrosis so they sent her blood in right away. However, the symptoms Katy was experiencing were not cystic fibrosis related.  

Janalen explained, “..so it took a couple of months and we ended up in the hospital, just after a rough weekend.  And they realized she had a collapsed lung at the time.” This extended their hospital stay to two weeks. During that time they were able to see several specialists and run several tests.  They were also able to send off chromosome testing. This revealed that Katy also had Prader-Willis syndrome.

What is Cystic Fibrosis and Prader-Willis Syndrome

When someone has cystic fibrosis, they build up thick mucus in their lungs which can clog the lungs and obstruct the pancreas.

Prader-Willis syndrome is when someone has an insatiable appetite.  They lack the signal from the stomach to their brain to let them know they are full.  

Caring for Someone with Two Diagnoses

Her first year of life was difficult.  Janalen explained, “After she was hospitalized, we had to give her a g-tube to eat..because of her cystic fibrosis we had to do treatments at least 4 times a day..she was on oxygen for about nine months.  So just keeping up with her care all day, every day.. She had physical therapy, occupational therapy, feeding therapy, speech therapy..but we made it through that first year.”

Caring for someone who has two diagnoses was what Janalen said, “very complicated.”  Katy was very unique with her set of diagnoses. In order to keep her healthy, they needed to keep her active to help keep her lungs clear.  This proved difficult with Katy’s low muscle tone due to Prader-Willis syndrome.  

Starting to Adopt

When Janalen and Rocky first wanted to start a family, they were unable to get pregnant.  During the many years they tried, they thought about the idea of adoption. After the birth of their two daughters, Janalen said that they felt like it was time to adopt.  

Three-weeks later, they watched their son be born.  Janalen shared, “..so the weekend we brought him home from the hospital, we found out we were pregnant.  And had her eight months later.  

Their daughter was not born with cystic fibrosis, she was tested and is a carrier for the gene.  Janalen and Rocky then adopted another two more children domestically. One of the children they adopted has been diagnosed with several things.  He had a processing delay, selective mutism, high anxiety and visual perceptive delay.

Adopted Child Gets Diagnoses

Rocky explained what all of their adopted son’s diagnoses meant.   At first they didn’t realize he had selective mutism. When he was home he was an extreme extrovert.  When they met with his school teacher, she asked them if he ever spoke? They were confused, they said, “We can’t shut him up, what do you mean?”  

This led them on a journey to figure out what was going on. Janalen the “queen of figuring stuff out” according to Rocky, was able to find information about selective mutism.  They traveled to Philadelphia to a selective mutism center. There they were able to find the cause of his selective mutism, he also had a delay in how language reaches his brain.  Once they figured that out, they have been working with him and he is starting to come out of his shell at school. 

Treating Everyone Differently

With all of their children having different needs, both Janalen and Rocky have learned that they can’t treat all of their children the same.  This is something that Abby, their oldest, says has been good for her to see. She has learned to understand that everyone has their own personal problems.

She said, “..you come to realize that everybody goes through stuff.  And even though it’s small, it still could be a big deal to them. So, I feel like you just have to be careful of other people and their feelings, and you can’t just push that aside.”

Adopting Even More Children

To their fast growing family, Janalen and Rocky adopted two more children internationally.  One boy from the Congo, and a girl from China with Down syndrome. As soon as they saw the pictures of their kids, they knew they needed to be part of their family.  

Getting their son from the Congo was a lengthy process that took over a year and a half to do.  However, when they got their daughter from China, they said the experience was faster and smoother.  Both children have acclimated extremely well and love being part of their big family.

Finding a New Dream

When they first started their family, they thought they would be done with their two daughters.  Janalen has since said, “I traded dreams. I traded what I thought I wanted, for what was actually best.  And so here we are. Right here, sitting here. And I think about it, and I’d take more children tomorrow.”


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