Imagine a football themed room with a giant television made to look like a Jumbotron or a bed shaped like a pirate ship or a wall mural depicting ocean life. These dream bedrooms that inspire a child’s imagination and transform their lives are the gift of The Starlight Project, a local non-profit organization that creates bedrooms for children with special needs in Jacksonville and St. Augustine. Starlight Project dream rooms are unique, with therapeutic benefits integrated throughout the space creating both sanctuary and therapy room for recipients.
The Starlight Project was founded in 2011 by Craig, Cherie, Eden & Elle Sussman of Palencia. The idea came to Craig, a Neonatologist and Cheri, who worked in the non-profit world before becoming a stay-at-home Mom, when they saw a program about a non-profit organization called Special Spaces that creates dream rooms for terminally ill children. “We always knew we wanted to give back and we were looking for the right way”, said Cherie.
The Sussman’s decided to do something similar by creating dream bedrooms for children with special needs, as a group they seemed underserved but could benefit greatly. “We have a blessed life and this is the perfect way to honor the memory of Craig’s father, Jeffrey Sussman and my grandparents, Arnold & Pauline Lederer. They loved children.” Also, Craig’s father used to flip houses so that fit in their vision as well. The ‘S’ in Star and ‘L’ in light stand for their last names, respectively and honor their memories.
Once the Sussman’s had the idea they needed a partner organization and found one in the Down Syndrome Association of Jacksonville. DSAJ Executive Director, Debbie Ruvels helped the Sussman’s navigate the non-profit world, which can be tricky. A caveat of this partnership is that roughly 25 percent of the rooms are for children with Down Syndrome, while the remainder go to those with other special needs including Autism and Cerebral Palsy.
The next step was bringing together people to do the good work. As luck would have it, the perfect storm of creative and talented artists and designers seemed to appear at exactly the right moment to become the Starlight Project team.
Woodworker, Zach Strom, is a 5th grade elementary school teacher and also the owner of Spots-4-Tots Play Houses. Mural Artist, Christine Applewhite of www.tiniart.com; Seamstress, Eileen Young & Interior Decorator Amy Schuman, a local designer who has worked on numerous model homes, including some in Palencia. The team members volunteer their time to The Starlight Project, including Dr. Craig Sussman, who can sometimes be found painting rooms and Cherie, who acts as Executive Director and also helps with decorating and brainstorming ideas.
Cherie says they are all passionate about helping children and loving what they do makes it fun. “When we get together we laugh a lot".
There is an entire process that occurs before the team even begins working on a dream room. First comes a review of applicants, switching it up so there are equal numbers of boys and girls with different ages and types of special needs. Once they have chosen a child, Cherie meets with the child’s teachers, therapists and parents and creates a list of the top things that the child loves, such as swimming or art or baseball. They combine this with those areas that pose a challenge, such as needing a changing table for an older child or custom designed cubes with pictures for a non-verbal child. They come up with a final list of the top 10 things they want to address in the room. Next the team meets to brainstorm how they can translate this therapeutically within the bedroom to make it not just an imaginative room but one with a purpose that serves the child and his family. They install the room in a 2-3 day period and send the family on a dream weekend while they do it, another aspect of the Starlight Project that reflects their deep understanding of the stresses of raising a child with special needs.
The Starlight Project completes a few rooms each year and currently has a 3 year waiting list. According to Cherie Sussman, keeping it small allows the team to be part of the development of each room. It also creates a non-profit organization with heart.
The Starlight Project has been chosen as the featured organization for the Palencia Street Festival coming March 29th.
They are currently working on a huge project for a local school, The Therapeutic Learning Center. Look for photos in our next issue. If you would like more information about the Starlight Project or would like to submit an application for your child, please visit their website at http://starlight-foundation.com/wp/.
St. Johns Magazine blog features articles written by & about the people, places and events of St. Johns and the surrounding communities.