Child from Kuwait waits for liver transplant in Pittsburgh

Published May 8, 2013 at 10:57 am (Updated May 8, 2013 at 10:57 am)

Fahad Alhajri has a contagious smile and even when physical therapist James Kittelberger stretches his stiff muscles a little too far, Fahad doesn’t cry out. Instead, he says in a tiny voice, “Hello pain.”

Fahad has been on the liver transplant list at Childrens Hospital of Pittsburgh for two years and has said, “Hello pain” far too many times for a 9-year-old.

Fahad was born in his native Kuwait with the rare condition of maple syrup urine, an inherited disorder where the body is unable to process certain protein building blocks. The name, maple syrup, resulted as those affected have sweet-smelling urine. The disease affects 1 in 185,000 infants in the world, with a higher percentage occurring in the Old Order Amish and Mennonite populations. In that group, the estimate is about 1 in 380 births.

For physicians in Kuwait, MSU was virtually unknown, and the lengthy diagnosis resulted in damage to Fahad’s young body.

He is only the second known person born with the disease in Kuwait. The first, a girl, died when she was two months old, and in Fahad’s case, the disease was so severe that he slipped into a coma four times. Ultimately, testing was done in France, with his father, Mutlaq Alhajri, traveling to London to acquire the necessary medicine.

According to Fahad’s mother, Aisha Alhajri, her son lives on a restricted, protein-free diet that will continue until the liver transplant.

Two years ago, Fahad and his parents moved to Pittsburgh to wait for a liver transplant, leaving behind four older brothers in the care of an aunt. Fahad is the youngest.

The family settled in Green Tree and Fahad attended classes at Pathfinder School in Bethel Park. He has since been main streamed in the Chartiers Valley School District, where he is in the fourth grade and absolutely loves his teacher, “Mrs. D.”

Fahad was receiving therapy through Childrens Hospital where he was fitted with braces that supported his muscles, but did not strengthen them.

Then, one day, the family was sitting in their van at the traffic light on Washington Road in Bethel Park when they noticed a sign at the Landmark Building for the Physical Therapy Center, where Kittelberger is the physical therapist. When Fahad met Kittelberger, a bond was formed that continues to grow. That was 10 months ago, and since last June, five days a week, Fahad has worked with Kittelberger to strengthen his muscles. When he has healed from the eventual liver transplant, he will be ready to sit and stand on his own. Even now, he uses a wheeled walker to push himself around the therapy center, something he couldn’t do last summer.

Kittelberger likens Fahad’s current condition to someone with cerebral palsy. His right side is weaker. The weakness, Kittelberger said, is the result of oxygen deprivation during the numerous comas.

Every visit, Kittelberger works the muscles in Fahad’s arms and legs, and concentrates on the midsection.

“No braces,” Kittelberger said. “I want his own muscles to work.”

His mother is a computer engineer in her native Kuwait. His father is a civil engineer and for two years, the parents have dedicated their lives to getting Fahad healthy. She is able to work occasionally on the computer. When asked if he was able to work while waiting for Fahad’s transplant, Mutlaq Alhajri replied through his wife, who speaks better English, “I work for Fahad.” A board smile broke out across his face.

Even after the transplant, the family is to remain in the Pittsburgh area for a year for physicians to monitor Fahad’s condition. During that time, Kittelberger said he will continue to strengthen Fahad’s muscles.

His parents said Fahad never complains about his daily visits to see Kittelberger.

“He likes what we do here,” Kittelberger said. “He’s a normal kid who happens to be from Kuwait. We don’t want this to be easy. We want him to work.”

When not working with Kittelberger or attending school, Fahad likes to watch Jordanian television and to work on his iPad.

Free time is not on Fahad’s schedule.

“I have seen an improvement with Jim,” Aisha Alhajri said. “He [Fahad] is hungry after physical therapy, so there is no time at home to do exercises. He goes to school and then to bed.”

As Fahad recently maneuvered with his wheeled walker around the Physical Therapy Center, he said he wanted “around again.” His face was all smiles and his eyes twinkled with pride as he used his own mobility to move forward.

The future is uncertain for Fahad. The time until a liver becomes available seems endless.

There have been benefits for Kittelberger as well. He has made three new friends from Kuwait and in the process, has picked up several words in Arabic.

When the final therapy session has ended, Fahad has healed and developed mobility, and the family prepares to return to Kuwait, the tears will flow. For Kittelberger, there will never be another Fahad, and for Fahad, there will never be another friend like his beloved Jim.

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