Rare genetic disorder gives Luling child chronic hunger

Mother goes through extreme fitness plan with child, loses more than 100 pounds

Luling’s Kelly Robbins was often told her daughter, Kylar, wouldn’t be able to experience the kind of happy life any mother dreams of for her child.

She wasn’t all that interested in accepting those claims as truth.

Neither, as it turns out, was Kylar.

Kylar was born with Prader-Willi syndrome (PWS), an uncommon genetic disorder in which seven genes on chromosome 15 are deleted or unexpressed. The effects of PWS may manifest in a number of physical, mental or behavioral problems. It’s estimated PWS may afflict just one in 30,000 people worldwide.

The most common and, in many ways, serious of those is that the part of the brain that controls appetite doesn’t function properly, leading to a chronic feeling of hunger.“It’s not just a feeling of, ‘I forgot to eat breakfast,’ but a feeling like you’ve been stranded in a desert with nothing at all to eat,” Robbins explained.

Making things worse is another effect from the syndrome that affects metabolism. Because of her affliction, Kylar needs roughly a third of the calories the average person her age needs to function. Anything more than that could lead to excessive weight gain or, eventually, life-threatening obesity.

For the first 11 months of Kylar’s life, Robbins had to force feed her with a bottle — the muscles in the child’s mouth did not develop, another effect of PWS.

For 10 months, Kylar looked like a newborn. She didn’t walk until she was two-and-a-half, and only sat up for the first time when she was 13 months old, those things also related to the lack of muscular development PSW yields.

“In the beginning, it was extremely difficult,” Robbins said. “When you’re pregnant, you’re just so excited for that baby to come and for all of the things you’ll be able to share. When I got the diagnosis … it was like the world is ripped out from you. I wondered, ‘why her?’ and ‘why me?’ People are telling you what your child is never going to do. “At some point, you just snap out of it and say, ‘OK, this is what it is. Now, what do we do from here?’”

What the mother did was take initiative. Kylar would undergo the necessary therapy sessions to combat her physical issues. When it came to hunger, Robbins made a decision to manage her daughter’s ailment through a lifestyle of healthy living and eating — one Kylar wouldn’t have to embark upon alone.

“I was overweight myself,” Robbins said. “I wanted her to know she wasn’t in this by herself, that we’re not doing this because of a disease, but because we want to.”

In the first 10 months of that lifestyle shift, Robbins lost 103 pounds.

Kylar, now 3 years old, is putting in the work as well. “She’s really awesome,” Robbins said. “She’s so laid back.

She always wants to do her full hour of therapy at once. If you try to help her, she’ll look at you and give you that, ‘No, no.’ She wants to do it herself.

“She’ll even do Insanity with us,” Robbins added with a laugh. “Not everything, of course, but she gets involved.”The two are featured in a pair of videos by the United Way, who have offered the single mother and daughter assistance along the way, partially by sponsoring the Greater New Orleans Therapeutic Riding Center, where Kylar undergoes part of her physical therapy, to make those sessions affordable.

“When you look at Kylar in the first video, when she couldn’t even stand up, to the second one, it’s so vastly different,” Robbins said. “Now, it’s like we almost can’t even remember those days, given how far she’s come.”Robbins said doctors once told her Kylar would never be able to live independently. Those fears have been extinguished.

“They told me that this would be one of the most stressful things you could ever experience,” she said. “It was devastating and I was so worried. But I’m not anymore. I know there will be obstacles, but we’ll get through them.”On May 28, Robbins will be involved with the sixth annual “One Small Step” 5K race at Houma’s Mulberry Park. The event has been established to help raise money and awareness for the Foundation for Prader-Willi research.

Though Robbins no longer harbors the same fears she had at the outset of she and Kylar’s battle against Prader-Willi, she hopes for a cure. At the very least, she believes something will be found that can curb the hunger those who suffer from Prader-Willi must deal with.

“You never want your child to be in pain,” Robbins said. “I know when I’m hungry, how bad it can feel. I can’t imagine feeling that all the time. I definitely believe they’ll find something to help with it.”

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