Maddie is my 6-year-old daughter. She has been seen by her Elks therapist for the past three years to help with her delays related to her Rett syndrome and Crohn’s disease. Rett syndrome is a rare postnatal neurological disorder. It occurs primarily in girls and is more rare in boys. She has loss of speech, inability to walk, poor muscle tone, and loss of functional hand use. She has gastrointestinal issues, seizures and dystonia. She has difficulty feeding herself and chewing food. She often swallows food whole and is at risk of aspiration. Her therapist typically visits with us at our home on a weekly basis to help with her independence and function.
Our primary concern has been to help Maddie maintain or improve her self-feeding skills. She has difficulty coordinating her chewing and swallowing, but with a watchful eye, coaching and hands on intervention she has been able to maintain her ability to feed herself with assistance using a fork and continue to drink out of her straw cup. We must constantly monitor Maddie while she eats because she could easily gag or choke on food if she swallows it too soon or when she isn’t ready. Repetition is important for Maddie because regression occurs when she isn’t participating in an activity like feeding, or play. When Maddie isn’t ready to eat for her therapy, we are able to change plans and work on her physical skills as well as play.
Facilitating the purchase of durable medical equipment she needs to function
in the community is yet another area our therapist has provided us. Without adapted equipment, Maddie would have less opportunities to play and thrive.
With weekly therapy provided by the Washington Elks Therapy Program for Children, Maddie receives her occupational therapy at no charge due to the kindness of the Elks of Washington State. Thank you Washington Elk’s Therapy for making a difference in my daughter’s life.