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news News Wednesday, May 20, 2020 Wednesday, May 20, 2020 2:53 PM - Wednesday, May 20, 2020 2:53 PM

Mother and son with unique disability give back

Mother and son with unique disability give back

A mother and son born with a unique physical disability are teaming up to help children growing up with similar conditions. Linda and her son Tim have Holt-Oram syndrome, which among other issues, affects the bones in the upper limbs. In their case it means that mother and son were born without arms. This physical difference has not slowed down their lives or their natural affinity for helping others.

When Tim was born with the same condition Linda has, she knew where to bring him for care – Shriners Hospitals for Children — Chicago, where she had been treated as a child. Here, Tim would benefit from the same expertise in orthopaedic care and therapy for children with limb differences as she had. Shriners Hospitals for Children is a special place where physicians see more rare conditions in children than many other health care systems. Linda and Tim learned to use their feet to eat, dress and play like other children do with hands. They thrived thanks to the occupational, physical and recreational therapy provided by the hospital staff, with Tim having the opportunity to try a number of sports activities he might not have otherwise attempted. The teen athlete even went "viral" with a box jump video from a summer camp for kids with limb differences.

The mother and son wanted to support others who are managing life without arms. They now use their unique skills to help and mentor other patients. 

Recently, we watched as Linda worked with Robbie, a bright 4-year-old. His mom said, "He is the only one in his preschool class who knows all his letters."  Robbie is a patient of Jeffrey Ackman, M.D., who specializes in limb differences in children at the Chicago Shriners Hospital. Robbie has bilateral upper extremity amelia and proximal femoral focal deficiency. His family has met with Tim and Linda several times. 

On a sunny day in the activity mall, we observed how, with Linda's encouragement, Robbie turned his I can't into an I can. For the first time he climbed into a toy car and moved the vehicle by himself. The pair also worked on Robbie taking Linda's socks off using his feet to do so, an important skill for him to master as he grows up. Robbie receives therapy at home in Indiana, but his parents say the connection with Linda has been very helpful. It has motivated their son to try new things by seeing how to do them with a different physical approach.

Linda, a former teacher, also benefits from the interactions. “I love watching children grow and develop. I am always happy to network with parents through Shriners Hospitals for Children. I enjoy sharing my story with other families and offering encouragement to them," she said.

In another mentoring situation earlier this year, Tim got to miss part of a school day. He came to the Chicago Shriners Hospital with Linda for a special lunch reunion with a young girl named Alice and her family. Alice was also born without arms and was receiving therapy at the hospital as an international patient from Brazil. The two families had originally met at the hospital in 2015 and try to meet whenever Alice’s family is back in Chicago for care. Alice has an older sister the same age as Tim. Before their reunion ended, Linda presented Alice with a blanket she had knitted with her toes. Tim and Alice chatted and posed for a photo on our hospital indoor court before saying goodbye.

As the mother of a teenager, Linda said she has really enjoyed watching Tim as they mentor patients together. “It’s really cool to bring Tim to the hospital and see him interact with the younger kids. He’s patient and kind, confident and silly. The younger kids really respond to him. As a mom it makes me proud to see him become a role model for others.”

Alice and TimLinda knitting with feet

Pictured: (top right) Linda and Robbie, (bottom left) Alice and Tim, (bottom right) Linda knitting a blanket with her toes.