During the Fourth Congenital Hyperinsulinism Family Conference to take place March 17th and 18th at the Children’s Hospital of Philadelphia (CHOP), tweens and teens with HI and their siblings will produce a show that will be broadcast to pediatric patients at CHOP.
A gift from the Ryan Seacrest Foundation for a recording studio known as The “Voice” is making the creation of this show possible. The” Voice” which is housed in the lobby of CHOP was installed to aid CHOP in caring for the general well being of patients, the whole child. The shows that have been created have been highly interactive and creative.
The show that will be produced during the HI conference sponsored by CHOP and Congenital Hyperinulinism International brings a new dimension to the” Voice” and to CHOP. Many of the HI tweens and teens who will be producing the show were fairly long term patients at CHOP and at other Childrens’ hospitals. Like the current CHOP patients who will have a chance to take in the live show, the young people with HI had to endure operations, trials, and complicated medical regimes often involving medical devices hospital stays lasting for months.
The idea of the show is to give the current patients at CHOP hope, that they will go on to lead full and interesting lives just as the HI youngsters have. Some of the themes our HI tween/teens will focus on in the show are:
- Focusing on the good times and accepting there will be some hard times. Everyone has ups and downs.
- Experiencing serious illness as a child makes you stronger!
- Early challenges with health help us appreciate the small wonderful moments in life.
- Friends and family can be very understanding and helpful with chronic illness management.
- The more you share, the more likely friends and relatives are to understand and be helpful.
- Managing chronic illness is so important. Planning is key.
- Getting to know other kids dealing with similar issues is so helpful.
- Siblings can be a great support.
- We are here for you! Let’s stay in touch.
This whole project was the brain child of Susan Becker, Coordinator of the Pet Scan Program at CHOP. Susan has held many crucial posts at CHOP, most recently as Nurse Coordinator of the Congenital Hyperinsulinism Center at CHOP. Susan believes that the experience of producing the show will be fantastic for HI tweens and teens and that it will be very meaningful for them to give back. Teresa Dansbury, the current Coordinator of the HI Center at CHOP ran with Susan’s idea and made it happen. We are so grateful to both of them for this opportunity.
In addition to the thematic aspect of the program, the conference participants will have an opportunity to select musical offerings for the current CHOP patients.
