The following is a blog post written by Darla Clayton, the mother of TeamUP Co-Captain Trent Clayton. Both she and Trent have CCM, or Cerebral Cavernous Malformations, which is a rare genetic disease that causes brain and spinal tumors. Recently they took part in a ground-breaking study, about which a documentary was filmed, so we asked Darla to share more about Trent’s journey with CP (cerebral palsy) and their recent clinical trials for finding a cure for their CCM.
Trent’s journey with cerebral palsy (CP) has been a bit out of the norm. In his case, his CP was caused by a rare disease that caused bleeding lesions in his brain. To qualify for a diagnosis of CP, you have to have a brain injury that causes motor symptoms and occurs before the age of one year. CP is the most common motor disability in childhood. There are many different types of CP. Trent has hemiplegic CP, which affects the muscles on the right side of his body, causing weakness and spasticity. His brain has a hard time communicating with his right side so movements tend to be slow, and dexterity is limited. His ability to move his fingers and wrist is minimal, he has paralysis in his foot and ankle and he has foot drop, which causes his toes to drop down while he’s walking and can cause tripping. He uses an Allard ToeOff® Flow brace which helps his toes spring back up while he’s walking and running. It’s given him the freedom to do some pretty amazing things and not worry about drop foot causing tripping while he’s out on his adventures!
As I mentioned above, Trent was diagnosed with CP because of an injury caused by a rare disease. He has genetic cerebral cavernous malformations (CCM) which causes vascular tumors in the brain and spinal cord. Trent had a large cavernous malformation bleed in his brain as a baby which permanently damaged the motor area on the left side of his brain. He had his first brain surgery shortly after turning one year old, and his 2nd about a year later. Cavernous malformations are unpredictable, we don’t entirely understand why some behave, and others are troublemakers. Unfortunately, Trent had a lesion that was trouble and then some! The doctors struggled to get all of the cells of the lesion during his surgeries and due to the delicate location in his motor area they were cautious to not do more damage than had already been done. When CCM cells are left behind, the lesion can grow back. This happened twice, but it seems that the 3rd time was the charm. When Trent was 12 years old, they were able to remove the entire lesion. Having the genetic type of the illness means that he will continue to grow additional CCMs over time, but for the moment, things are stable and we can find some solace in that.
Having a rare disease is challenging in many ways, there are often few treatment options, and the disease is frequently not well understood. We are very lucky that we found the Alliance to Cure Cavernous Malformation when Trent was young. They were a huge support for us and they’re the reason we understand so much more about CCMs than we did when he was first diagnosed. The alliance has been driving research, and thanks to their efforts, Trent is involved in something incredibly exciting! He is part of the clinical trial testing the first-ever medication for CCM. Knowing that the only treatment for your illness is brain surgery is daunting, to say the least. Add to that the fact that you have no idea if and when your brain might hemorrhage, how debilitating the outcome of a bleed will be, or if your lesion will even be in an operable location, it’s a terrifying disease to live with. The hope that there is a clinical trial, that there may one day be a medication for this disease makes the future look so much brighter. Trent was thrilled that he met the criteria for the study and was selected to participate. While we can’t ever express how much hope this has given all of us, this video of Trent on study day is a good start, there’s a moment where he’s holding the pills in his hand for the first time, and he looks down at them like “WOW! This could totally change my life”! If you want to learn more about Trent’s journey with cavernous malformation, he was recently featured in an award- and festival-winning documentary called Eloquent.
Having cerebral palsy lead to challenges for Trent that at times felt insurmountable. Trent has always had a knack for figuring out a way to take on those challenges or find a way to skirt around them and get to the other side despite them. He loves the outdoors and loves hiking and exploring in the woods. He’s into wild plants and medicinal herbs and finds peace in nature. His Allard AFO lets him get out in the woods and take on some pretty challenging terrain. The freedom to hike, see new things, and be out in nature is profoundly meaningful for Trent.
Trent is a national record-holding discus thrower and now is involved in coaching young throwers who are up and coming on his adapted sports team. He’s a talented nature photographer, he loves to play dungeons and dragons, and he’s into 3D printing. He’s been accepted into a 3D Engineering program at a technical college next year and hopes to one day work creating items to make the lives of people with disabilities easier. Trent’s CP has been one of the many things that have shaped who he is, but it doesn’t define him. His ability and drive to overcome the obstacles that his CP puts in his path says more about him than the obstacles themselves ever could.
Darla currently lives in West Chester, PA with her husband Gary, children Trent and Ama, and two cats — Monster and Ford. In addition to being the Community Relations Specialist for the Alliance to Cure Cavernous Malformation, she is building a small private psychology practice. In her free time, Darla loves crafting, cooking, swimming, working out in virtual reality, camping and just being outdoorsy.