By Norma Dittman
Murray County News staff writer
Ten-year-old Addysen Hendel has a few places on her bucket list that she would like to visit. She didn’t know exactly what would be top on her list until her pediatric pulmonologist, Dr. Wilfredo Veloira, Avera Sioux Falls, and the Child Life Specialists, contacted Make-A-Wish® Minnesota on Addysen’s behalf.
Addysen has Kartagener’s syndrome, which brings her respiratory distress often throughout each year. Kartagener’s syndrome is a rare hereditary disease. It is caused by a mutation that can occur on many different genes. Symptoms of the disease are frequent respiratory infections, sinus infections, ear infections, and chronic nasal congestion.
Those people who have Kartagener’s syndrome have primary ciliary dyskinesia, meaning that the cilia do not move properly to help prevent infections.
Those affected also have situs inversus which is where vital organs develop on the opposite side of the body, forming a mirror image of the normal positioning.
While it is possible for a person to have primary ciliary dyskinesia without situs inversus, when a person has both, it is then known as Kartagener’s syndrome.
In Addysen’s case, neither parent has Kartagener’s syndrome, but both are carriers.
Addysen’s treatment for the disease includes frequent doctor’s visits and hospitalizations, three nebulizer treatments per day, medications, pulmonary vest therapy, and other pulmonary therapies. Her parents are vigilant in watching Addysen for signs that she is not feeling well.
Addysen’s family members are mom – Jamie (Timmerman), dad – Travis, sister – Lauryn – age eight, brother – Trysten – age five, and sister – Paxtyn – age five.
Shortly after Dr. Veloira and his staff submitted Addysen’s name to Make-A-Wish® Minnesota, Addysen was once again hospitalized in Sioux Falls with respiratory distress. One of the Child Life Specialists, Leah, came to play a form of Hangman with Addysen. When Addysen had completed the game, she was more than delighted to read what she had spelled out. It read: “Congratulations, Addysen. You get to Make-A-Wish.”
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