Celeste was born March 2019, four weeks early, to a family prepared for a baby to be born with I-Cell Disorder. I-Cell is an inherited metabolic lysosomal storage disorder. It affects many parts of the body, leading to small, weak muscle tone and compromised organs especially heart and lungs. The children stop growing in their second year of life. They present with delayed motor and language skills. Most kids do not develop the ability to walk independently.
Celeste is the star of her household. She brings a smile and charm and knows how to get what she wants, without using words. She has two siblings, an older brother and sister. She loves interacting with them, going on walks outside. Recently, she and her family were able to take a travel trailer to visit family and camp with her. They are making memories with her, for sure.
The Elks Therapy Program began working with Celeste in the Fall of 2022, to help her family identify strategies and toys to aide Celeste’s learning and development. She is always curious and creative in her play, giving us a good laugh and amazement at her skills. She remains non-speaking and is on a waiting list for speech therapy. She is receiving physical therapy, learning to use her walker and is being prepared for a wheelchair, in the near future, to increase the number of places she can go.
We are grateful to the Elks of Washington for this home-based therapy program. Given Celeste’s fragility last year, she would not have been able to go to a clinic or group program. Her mother is especially proud of the fact, early on, she and her other family members learned to help Celeste participate in all their activities and they communicate with her throughout the activities they do. She has benefited from all these interactions, as is evident wherever she goes.