Helping AJ Sleep Safely

AJ is a very happy two-year-old boy who loves to eat avocados and get hugs and kisses from his siblings when they return home from school. He loves to speed crawl around the house when he knows one of his family members is chasing him, and his smile lights up the room. 

AJ was born with Pallister-Killian Syndrome (PKS) which is an extremely rare genetic disorder; the prevalence is estimated at 1 in 20,000. His condition is characterized by weak muscle tone, intellectual impairment, developmental delays, distinct facial features, seizures, and other birth defects. Due to PKS, AJ is behind on many developmental milestones including sitting, creeping and standing. He experiences vision and hearing defects and utilizes hearing aids.

His lack of safety awareness and motor skill limitations make it unsafe for him to sleep in a crib or a traditional bed with rails. He could pull up on the crib and would be in danger of falling out. Also, he was getting his legs caught in the rails and was unable to free himself. The family requested funding for a Cubby Bed safety bed which has a tensioned canopy and zippered enclosure that prevents him from eloping, self-harm, strangulation, and entrapment. He will be able to utilize the bed for decades!

The Love Fund partnered with the United HealthCare Children’s Foundation and Bishop Sullivan to fund the bed.

To learn more about AJ check out his video - https://youtu.be/vkIn-4hTA_k