The story of Nick
Our Son Nicholas was born with Rubinstein-Taybi Syndrome(RTS) which is a rare genetic condition, affecting about 100,000 to 125,000 newborns each year worldwide. RTS caused him to have severe developmental delay, and feeding issues that led to him having a G-Tube placed to eat. He had low muscle tone, and poor weight gain, mobility, dental, vision, and speech problems. At birth, we were told Nicholas would never be able to accomplish anything in life, but that wasn’t the case. With a lot of hard work from
health professionals, teachers, family members, and himself that was proved wrong. It may have taken him longer than others to accomplish things but he did. His light would instantly light up any room he walked into, his smile and laughter could make the worst days brighter. Due to this disease being so rare no medical staff had heard of it except Children’s of Cincinnati where they have a program for it. Due to the lack of knowledge about it, it made it harder to treat any illness that arrived or even know what may come in the future. His mom was the expert who carried everything to all new appointments to educate others on it. Unfortunately, he lost his battle on June 29, 2023, at the age of 14 from all the complications due to RTS. We will always share his story and raise awareness about rare diseases. His light will forever shine so we light up our colors for him.