We are saddened to announce that Lucas went home to be with Jesus early Sunday morning. Our hearts are broken. Please keep Phil and Courtney and the girls in your prayers as they walk through the coming days.

We are shifting this fundraiser to focus on a Celebration of Life for Lucas, and any donations that exceed the expenses involved in that event will be applied to finding a cure for HNRNPU-Related Neurodevelopmental Disorder and a Scholarship Fund for other children with this diagnosis. If you would like to speak with someone regarding a donation previously made, please contact Janelle Hyde-Williams (organizer). All communications will be kept in confidence.

I have kept the details of the original fundraiser posted below for those who wish to know Lucas's story.

This is Lucas and his mama, Courtney. Lucas is a 5-year-old bundle of joy, love, and energy who touches the lives of all who know him. He is adored by his three older sisters; Lilah, Violet, and Evelyn, and by his parents, Phil and Courtney. Courtney teaches music at a local school and is beloved by her students and their families. Some of her students have decided they would like to do what they can to help this family with an important need. Which brings us to this GoFundMe story:

Lucas has been diagnosed with an exceedingly rare (fewer than 200 cases in the USA) medical condition called HNRNPU-Related Neurodevelopmental Disorder. Characteristics of this disorder tend to include autistic features, epileptic seizures, speech and language delay or absence, and abnormal breathing patterns such as hyperventilation and/or apnea, among others. Lucas experiences all of the above-listed characteristics.

Lucas experiences frequent seizures, previously known as Grand Mal but now referred to as Frontal to Bilateral Tonic Clonic, and often times these can happen during the night. As you can probably imagine, this means his parents are on high alert during the nights. Lucas's family dreams of being able to find and obtain a seizure alert/response dog for him. Not only would it provide his parents with peace of mind but Lucas is also a flight risk. He has learned how to unlock and open doors in their home, and has a tendency to wander when they are in public. An alert dog would also provide safety for Lucas in these circumstances. Unfortunately, insurance will not provide for a service dog for Lucas. This is in part due to the HNRNPU-NDD diagnosis - it is so rare that it has no "code" for insurance diagnostic purposes. This has made obtaining medical services for Lucas difficult for his parents. In addition to a seizure alert/response dog, Lucas would also benefit from a sleep study and a night nurse. None of these things are covered by insurance due to his rare diagnosis, and they are all cost-prohibitive. A seizure alert/response dog can cost anywhere from $15,000 - $50,000 between the cost of the dog and the cost of training. Training takes two years. There are charitable organizations that provide service dogs at little to no cost, but the waiting lists are years long for these programs. Meanwhile, when Lucas goes to sleep at night, his parents are never sure what the night will hold or what the morning will look like.

Those of us who know and love Lucas's family want to find a way to get Lucas what he needs both for his safety and for his quality of life. Would you consider helping Lucas's family to get closer to being able to obtain a seizure alert/response dog, sleep study, and night nurse?