Meet Joshua
Joshua’s Story
Joshua was born with a genetic disorder called DYRK1A syndrome, a mutation of the DYRK1A gene on the 21st chromosome. Joshua has been to numerous doctors and to multiple therapies since he was 6 months old. Joshua never acquired the ability to speak, and he is tube-fed. In spite of his limitations, Joshua is a joy to be around. He loves music and likes to watch videos on YouTube. He is also very fond of sheep. However, we knew that eventually we would need a long-term plan for him.
Shortly after Joshua began high school in 2019, my wife was diagnosed with cancer. We started the process of looking for an appropriate place for him, as this was a glaring reminder that we wouldn’t be able to care for him long-term. A group homes wouldn’t provide the correct level of care due to his complex medical needs. Joshua needed an intermediate care facility, and there weren’t many options.
Since we had visited Asheville in the past, we became aware of the Irene Wortham Center (IWC) about six years ago. I reached out to the housing director at that time, and he gave me a detailed response to a list of questions which left us with a good impression.
In the meantime, we looked at options closer to our home in Charlotte and none seemed to be the right fit for Joshua. We toured IWC in July 2023, and were impressed with the fact Joshua would live in a house with other peers with similar levels of disability. Rose Street House was first and foremost a house. There were decorations and pictures of the residents in the hall. Each room was decorated for each resident. There is an activity room with a TV and toys. There is a newly updated sensory room with lights and special equipment. The residents eat in a dining room with fresh home-cooked food. We felt this would be the right fit for Joshua and put him on the waiting list for admittance.
A few months later, Monica, the new IWC residential services director, called and said a spot was available in January 2024. At first we weren’t sure if it was the right time for placement but, after some lengthy conversations, we decided it was best for all of us that Joshua move to IWC. He moved in January 3rd, 2024, a month before he turned 19. After a short adjustment period, he has done very well. Joshua has a beautiful room with a wall-mounted TV. His room is decorated with superheroes, and he has a great roommate.
The staff at IWC have done a great job, and we feel they have his best interests at heart. Each resident has a specific plan, and the staff does their best to maximize the potential of each client. One of the hardest decisions for any special needs parent is finding the best place for their loved ones. It is extremely difficult to entrust their care to someone other than you. Thanks to IWC, we now have peace of mind about his future. Please consider donating to the Irene Wortham Center to help other children and adults like Joshua!
Sincerely,
John and Kate Sikes
Parents of Joshua