Supporting a child with CHARGE Syndrome
Holly is beautiful, adorable little girl who is almost 2 years old and lives at home with her mom, dad and 2 older sisters. She has spent the majority of her life in hospital and suffers with a number of complex medical and physical needs.
Holly was diagnosed at an early age with CHARGE Syndrome, which stands for Coloboma of the eye, Hearts defects, Atresia of the choanae, Retardation of growth/development, Genital and/or urinary abnormalities and Ear abnormalities and deafness. She also has a Tracheostomy, which requires ventilation and is also fed via Gastrostomy.
Following on from input started by the charity for deaf and blind people, ‘Sense’ at Birmingham Children’s Hospital, the community speech and language team have continued to work with Holly, supporting her early communication development.
During sessions, Holly has demonstrated that she can directly access an ipad screen to control ‘cause and effect’ games and applications. When she uses the ipad, Holly is able to visually fix and focus on the screen and will listen. Her body stills and her secretions significantly reduce whilst she is concentrating.
After receiving a request for help, we are thrilled to announce that this week, we visited Holly and her mom at home and delivered an ipad and a variety of communication switches and an Applicator so that Holly is able to continue this important developmental work at home.
Holly and her mom were overwhelmed by these wonderful gifts made possible by you.
The Friends of Alfie Johnson