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Meet Our Friend Tony 

 

     Tony Estrada is two years old, and he’s been through a lot in those two years.  When he was just four months old, Tony began frequently visiting his pediatrician at a family care center because he was having difficulty breathing. The physician attributed the problem to asthma, but the treatment was not improving his condition.  After several appointments, Tony was referred to Cardinal Glennon Children’s Medical Center to find out just what was causing his breathing problems.

    In addition to respiratory trouble, Tony’s tongue, liver, and spleen had become enlarged. Many of his symptoms pointed to Cystic Fibrosis, but he tested negative for it.  Through many tests and examinations, the physicians at Cardinal Glennon made a diagnosis.  Tony had something much more rare - Hunter Syndrome.

    About 1/100,000 males are born with Hunter Syndrome, which can interfere with a child’s healthy development.  The effects of the illness vary from person to person. Many children afflicted with Hunter Syndrome experience difficulty walking, talking, and hearing, which are some of Tony’s symptoms.   

     No one could say for certain whether or not Tony would ever be able to walk.  He could take about three steps, but that was the limit. 

     A few weeks ago, Tony’s mother, Katie Willman, was organizing her four-year-old daughter’s clothing when she looked out of the room to see Tony walking around by himself. 

     “I cried when I saw him walking,” Katie says.  “After two years of seeing him struggling, the least he deserves is to be able to walk.”

     Tony’s family is hopeful that he will one day be able to talk, but for now he communicates with hand signals, like rubbing his belly when he’s feeling tired.  After the sudden transformation in his ability to walk, Katie is hopeful that he will burst into conversation the same way. 

     “I believe in miracles,” she says.  “Thinking negative doesn’t get you anywhere.”  Her optimism was tested again this summer when she had to bring Tony back to Cardinal Glennon for nearly three weeks to receive treatment for an MRSA (staph) infection and pneumonia.

     Katie stayed with Tony as much as she could.  She didn’t want to eat because her son couldn’t eat, didn’t want to sleep because he might wake up and she’d miss it. 

     “What really hurt me the most was seeing my four-year-old daughter go through it,” Katie says.  “She doesn’t know what’s going on.”

     Through everything, Tony has never lost his smile.   “He’s been through so much and he’s always happy,” says his mother.  He is now enrolled in preschool and visits Cardinal Glennon weekly to replace the missing enzyme that causes Hunter Syndrome.  Though he was unable to walk just weeks ago, he now enjoys running around and playing like any other toddler.

     Katie never lost hope for her son, and she encourages parents facing similar situations to stay positive.  “Be strong and support them,” she advises.  “God wouldn’t give you that child if you couldn’t handle it.”

 

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