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At 12 weeks gestation, his mother, Heidi, was told that his bladder wasn’t draining. At 14 weeks gestation, she was told he wouldn’t make it to term, and if he somehow did, he’d be so sick that he’d die soon after being born. She heard the same devastating prognosis from five doctors.
But nobody told Timothy he wasn’t supposed to make it.
At birth, Timothy was diagnosed with Prune Belly Syndrome (PBS), a rare condition occurring in only one of 40,000 births. Children with PBS are born without any – or without sufficient – abdominal muscles.
The syndrome causes severe urinary tract problems and also can lead to significant problems in vital organs. In Timothy’s case, his kidneys were underdeveloped, and he had to be placed on dialysis at only three days old.
Again, the odds were stacked against him. Half of babies born with PBS die within the first year of life; half of all infants placed on dialysis also don’t make it to their first birthday.
However, the fact that Timothy is now a happy, active toddler comes as no surprise to his parents. “From early on, I could see that he had a whole lot of fight in him,” says Heidi Valerius.
Although Timothy had survived infanthood, he was still facing serious health problems, including developmental issues. Heidi had him evaluated by an at-home therapy service to determine what could be done to help him. But the service didn’t understand PBS and only offered to send a student out once a month to work with him.
“At nine months old, he wasn’t sitting up or doing any of the things he was supposed to be doing,” explains Heidi. She knew he needed much more extensive therapy to be able to function as a normal child. So she contacted a friend from church who was a physical therapist at Our Children’s House at Waxahachie (OCH Waxahachie) to get him evaluated again.
During the initial assessment, the OCH Waxahachie staff saw the same fight in Timothy that his mother did. “They felt as if he showed he had the capabilities to do everything other children his age could,” recalls Heidi. “Them having hope, gave me hope.”
Timothy started going to OCH Waxahachie for physical, occupational and speech therapy. He immediately took to therapy and loves it so much, that when he misbehaves at home, Heidi says she uses the prospect of not taking him to therapy to inspire him to be good.
The progress Timothy has shown has been nothing short of remarkable. Recently, he was able to discontinue occupational therapy because his fine motor skills had improved so drastically that he has caught up with other kids his age. Yet, that isn’t the most extraordinary thing that has happened thanks in part to his therapy.
Typically, only PBS patients who have had abdominal surgery – unlike Timothy – are able to walk unassisted. “Some children with PBS never sit up, some never crawl, some never walk because of the lack of abdominal muscles,” explains Heidi. “Timothy is now walking on his own.”
Heidi remembers the exact moment it happened. “We had given him a walker to help him, and one day during physical therapy he put it aside and walked down the hall to me. So now he’s walking and running around too. It really baffles the doctors and everyone else.”
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