Eli is an amazing 6-year-old boy with a very rare genetic condition, TUBA1A – associated tubulinopathy, which causes changes to the brain. Many children with TUBA1A have developmental delay, tight muscles (spasticity) and/or reduced muscle tone (hypotonia) and eye problems. Feeding difficulties are also associated with this condition. But that does not stop Eli! He can walk independently and he has wheeled mobility options to accommodate longer distances and rough terrain. Eli has a wonderfully engaging personality, with his imagination and determination being second to none. When he is enjoying a therapy activity, he has the best laugh in the world.
Eli lives with his parents and great-grandparents. His family has provided him with many educational games and toys, but there is a multi-year waitlist for Occupational Therapy in the community. Thankfully, Eli’s parents heard of a Washington Elks therapist who was available to see Eli in his home. When the pandemic hit, his therapist and family pivoted to teletherapy. Both of Eli’s parents participate in teletherapy with him. They are prepared with activities and toys that Eli enjoys sharing with the therapist. Eli’s Washington Elks therapist mails activity packets to his home, so those activities and materials can also be used during teletherapy.
Eli has undergone eyelid surgery and procedures on his legs. In order to prepare him for these medical treatments and decrease anxiety, his OT has created personalized picture stories designed to help him understand what to expect.
As Eli grows, it has become more difficult to lift him safely. Eli’s Washington Elks therapist teamed with a local PT and Eli’s parents to select and advocate for a High Low Activity chair that allows him easier access and greater independence in getting into the chair. The chair allows Eli to be at the same height at the table as his family for greater social opportunity during mealtime. It also has an adjustable back and tray to accommodate vision and fine motor challenges, allowing him to be more successful in those activities.
Thank you, Washington Elks, for all you do to support the therapy program and children like Eli and their families.