First thank you shout out goes to Meghan, Bridget and Erin Kelley who attend the conference with me from New Hampshire. They all take on a leadership role in the affected children’s care room. These young smart professional women take time out of their own busy lives and schedules to volunteer with Our Promise to Nicholas Foundation and give over 110% effort the entire conference. They bring so much love, knowledge, peace, and grace to these families. We are lucky to have them join me each year!
This childcare is a gift for the parents at this conference. They can take time to learn about the disease, meet other families, meet clinicians and researchers, learn about the services and equipment they may need in the future and clinical trials or treatments their child may be eligible for to help slow the disease.
Due to the nationwide nursing shortage the BDSRA and Morgan DeBoth hired a company called Kiddie Corp. This is an organization that provides childcare for families at events. The staff from this company at our conference consisted mainly of women in Ohio who had taken care of children, adults, or family’s members with special needs.
Over the two days of childcare, we had around 27-30 affected children signed up. I am sure we did not have them all at once but there were times during the day that our room was hoping, bopping and very busy. It is challenging caring for the mobile unstable active children, keeping them safe and engaging the non-active children. We all worked together and made it work. I could see lot of smiles and hear lots of laughter.
I want to give a shout out to the on-site manager of Kiddie Corp Nicole Long. She was incredibly helpful checking the families in and out of our care, keeping all the paperwork, signatures up to date as well as giving the Kiddie Corp staff direction throughout the days.
We met many new families and welcoming our past little friends. The girls and I shed many tears missing the children that have passed since our last conference in 2019.
Thank you to Ethan Reason Foundation for your sponsorship toward the special music class and therapy dog session. Thank you to Regenxbio Pharmaceutical Company for your contributing sponsorship toward the childcare this year.
Thank you to our sponsor, donors, volunteers, and supporters of Our Promise to Nicholas Foundation. Without your past support we would not have been able to sponsor the care at this conference. We are grateful for your support.
