Fundraiser held for boy with rare disorder
ST. LOUIS, Mo. (KBSI) – His smile can light up a room. But when he was three months old, Abram Page of Advance, Mo., was diagnosed with GNAO1, a rare neurological disorder that causes developmental delay, seizures, and abnormal movements.
The disorder was discovered in 2013. There are only roughly 200 diagnosed cases, and there is currently no cure.
Abram’s parents, Macy and Kyndel Page, said they had questions from the beginning, but the diagnosis only raised more questions.
“There was a lot of confusion and worry, but we didn’t even know what we were worried about because we didn’t know anything about it,” Kyndel Page said.
“He first started having seizures when he was about six days old, and at that point we didn’t know why,” Macy Page said. “So as scared as we were to get the diagnosis, at least we finally had a cause for them. So it did answer a lot of questions, but it opened the door for more questions.”
The diagnosis was life-changing for Macy and Kyndel, as a large chunk of time has to be dedicated to caring for Abram, who will turn two years old on October 1.
“We were both employed and had really good full-time jobs. Unfortunately, I had to quit my job so I could stay home and take care of him,” Macy Page said. “Just because of all his medical needs, there was no way to send him to a daycare or babysitter or anything like that. So we get to hang out every day and do therapy and all kinds of things like that.”
Despite all of this, that smile hardly ever leaves Abram’s face.
“He is the happiest kid,” Macy Page said. “He loves to be around people. You can talk to him and he will smile and light up the entire room. Every time we come to get labs done, for a hospital stay, doctor’s office visits, it does not matter. He is stealing all the hearts.”
Saturday, May 7 Southern Barrell Bar and Grill in Puxico, Mo., hosted a benefit ride and scavenger hunt for Abram. Southern Barrel is located at 11927 State Highway K in Puxico.