Parents of a Boy with a Charcot-Marie-Tooth Disease are Asking His School for Help

Imagine being Rowan Marshall, a seven-year-old first-grade student with a debilitating rare disease. Rowan made it through the new student formalities. He is doing well at school. Now he faces the possibility of being transferred to a new school because he cannot navigate the stairs and, contrary to current regulations, there is no elevator.

As described recently by LOCAL12Online.com, Rowan’s school, Lindeman Elementary in Erlanger Kentucky, was built before elevators were required. Therefore, Lindeman is not subject to the new laws.

Charcot-Marie-Tooth Disease (CMT)

Curtis Marshall, Rowan’s dad, said that Rowan began to show signs of CMT when he was two years old. He was unable to lay his feet flat on the floor. He could barely move about as both his feet were locked in an upright position. Doctors cut a tendon in his feet to enable Rowan to walk. He is now able to walk with the aid of braces.

Rowan enjoys the company of his baby brother, Logan, who also has CMT. Rowan tells people that all he really wants is to just “do normal things.” When offered the possibility of being transferred to another school, Rowan and his dad requested that he remain at Lindeman.

The Biggest Challenge

Unfortunately, stairs are Rowan’s biggest challenge, but that is the only way Rowan can get to the classes located on the second floor. Curtis spoke to the superintendent of the school district, Chad Molley. He received a short answer which was to simply have Rowan switch schools. For a seven-year-old boy who managed to settle in with new friends, a new environment, and a new way of life, the timing would preclude an easy transition.

Local 12 asked Superintendent Molley if he would confirm, in writing, his recommendation that Rowan switch schools. His spokesperson responded that the superintendent had declined.

He did, however, issue a statement at a later date. His message was that the district and the school have worked closely with Rowan’s family to accommodate his current needs. He gave assurance that if Rowan’s needs change at a later date, the district and the school will cooperate and explore all options.

The Marshalls are now represented by attorney Randy Blankenship. According to his view of the situation, since CMT is a progressive disease, accommodations should be made for Rowan before, not after, his condition deteriorates.

He suggests various but, he believes, reasonable options, such as using a wheelchair lift that moves along the stairs or moving one or two classes to the first floor, and of course installing an elevator such as those now in the other schools.

Attorney Blankenship makes it clear that the school’s being grandfathered in due to the timing of its construction does not relieve the district of its obligations. He recently sent a letter to the superintendent to the effect that the building must be made accessible for Rowan and other disabled children.

A spokesperson for Local 12 asked the superintendent if the district would possibly consider any of the attorney’s suggestions but the news outlet was simply referred back to the superintendent’s initial statement.

Community members such as Dr. Joe Bailey, pediatrician and children’s advocate, caution that challenges such as the one Rowan’s facing can have lasting consequences.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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