Isabella, “Bella”, is a beautiful teenager who recently turned 18! When she was 2 years old, she was diagnosed with Rett Syndrome. Rett Syndrome is an extremely rare, non-inherited, genetic, postnatal, neurological disorder that occurs primarily in girls and sometimes in boys. Rett Syndrome leads to severe impairments, affecting nearly every aspect of a child’s life. At age 12, Bella had scoliosis surgery that did not go well and impacted her breathing, her neck and back. Additionally, she went into respiratory failure which resulted in the need of a tracheostomy to breathe and a feeding tube for nutrition. Bella is completely dependent on her family and caregivers for all of her daily needs. Though she is unable to speak, she is able to turn her head and change her facial expression. Bella is happy and will light up a room! She loves her family, church and Elmo!
While Bella has received therapy from other providers in the past, they were unable to continue to provide service due to her lack of progress, which is an insurance stipulation. Therefore, she would be discharged from therapy. Additionally, due to her compromised immune system going to a clinic for therapy was especially difficult and risky. Bella started receiving Occupational Therapy through the Washington Elks Therapy Program for Children in the past year. Thanks to the generous support of the Elks Membership, the Elks Therapy Program provides home-based therapy, at no charge to the family and is not beholden to the rules of an insurance company. Therefore, Bella will continue to receive Elks Therapy services as long as there is a need or until she turns 21.
When Bella began receiving Occupational Therapy through the Elks Therapy Program, her family was concerned about the tightness in her neck muscles that caused her to only look in one direction. Her Elks Therapist has been able to work with the family and the home nurse to create a home program to address Bella’s neck tightness as well as other limitations. Thanks to the Elks home-based therapy Bella is now able to spend time on her tummy, which has not happened since she was a toddler. She can engage in more purposeful play and visually follow items in both directions. Bella is also able to work on supported standing using a standing frame. Her Elks Therapist has also been able to support with the ordering of much needed equipment including a new wheelchair and a shower chair.
Bella and her family are very grateful to have home-based Occupational Therapy that the Washington Elks Therapy Program for Children, Inc. so generously provides. Thank you, ELKS!