This young "Jedi" suffered a stroke before his first birthday after a mass was discovered resting on his brainstem. Although the mass was originally believed to be a cancerous tumor, it was something much different but equally dangerous: a cerebral cavernous angioma.
As our friends over at Angioma Alliance explain, "Cavernous angiomas are vascular lesions comprised of clusters of abnormally dilated blood vessels. These lesions [are mainly] found in the brain and spinal cord. In addition to seizures, cavernous angiomas can cause neurological deficits such as weaknesses in arms or legs, vision problems, balance problems, fatigue, and/or memory and attention problems." In layman's terms, it's a ball of malformed veins that, if not surgically removed, can hemorrhage and lead to severe disability and death.
When Lauren and Daniel's third child, Anakin, was 9 months old, he suddenly became unusually lethargic and began vomiting. Anakin's unexplained behavior triggered his parents to rush him to the hospital to be checked out. Before his parent's could truly process what their son was battling, he was being airlifted hours away to the Texas Children's Hospital to have an unknown mass removed from his brain. A team of doctors spent 8 grueling hours trying to remove the suspected tumor, only to discover severe bleeding in the brain brought on by a surprise angioma. As the surgeons attempted to remove the complicated cluster, Anakin suffered a life-altering stroke. This was the moment everyone's life changed.
"He lost his ability to vocalize, including the ability to cry. He couldn’t feel pain, and seemed to have lost many of his basic instincts. He was no longer certain of who and what he was in the world (aka sensory processing disorder). He could no longer sit up or crawl. It was as if he transformed in to a 10 month old newborn," Anakin's mom, describes in a story she penned about her son's fight.
Anakin wearing his new weighted compression vest, wiggle cushion, & noise-canceling headphones from Holton's Heroes.
Anakin's parents had their son immediately begin intensive inpatient therapy right in his hospital room. After he was discharged a few weeks later Lauren and Daniel discovered finding adequate therapy for their sweet boy was proving impossible.
"We learned that pediatric stroke is not considered common," Lauren writes. "In fact, [we found that] too many pediatric facilities are not pediatric stroke prepared. We could tell that the therapists were out of their comfort zone, because Anakin was an extreme case of something already uncommon in the pediatric world."
However, like true brain injury warriors, they persisted.
More than 5 years later, Anakin has impressively come a long way, thanks in large part to his determination and the tenacity of his amazing family. Today, Lauren tells us that Anakin is a physically robust 1st grader, who suffers greatly from sensory processing disorder. He has autistic traits associated with brain injury and, sadly, still lacks the ability to cry. He has right-sided hemiparesis, and although slight, it prevents him from having a full range of motion. The stroke left him with vision and auditory issues, as well as a communication disorder that he bravely tackles every day.
Incredibly, with all of Anakin's therapy needs, his parent's only requested a simple weighted therapy vest when they applied. We informed them that we not only wanted to do more, but we had to because two amazing schools in New Jersey—Beeler Elementary & DeMasi Middle School—held fundraisers specifically to help a hero just like Anakin. The combined money they raised allowed us to not only get Anakin the requested vest but also a balance board, a ball pit with 500 crush-resistant balls, palm weights, ankle weights, noise reduction headphones, sensory vibrating lap pad, a tactile sensory ball, a calming weighted comforter, a therapy body wrap, school supplies and a personalized iPad!
"I am in awe! Thank you all so much!" Lauren wrote to us. "We, my husband and I, are converting the playroom into a therapy room, thanks to your generosity. It's always been a pipe dream, so to speak. I can not express just how much this will change Anakin's life. We currently live 2 hours from his therapists, and his school does not have a sensory gym. This gives him open access to a sensory gym, plus, the iPad will allow him to interact with his tele-therapists while in his sensory room. We are so grateful."
We couldn't imagine a more worthy child and family to help. Thank you to all the amazing students, teachers, parents, and faculty that successfully arrange both bracelet sales earlier this year. Look at what your generosity has created!
“There’s no way to put this in to words, though, I’m certainly trying. Thank you so much for giving Anakin the tools to recover. I am completely humbled!”
We are Holton's Heroes, a 501(c)(3) nonprofit dedicated to helping pediatric brain injury survivors get the tools they need to succeed in recovery.
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"I hollered at the nurse to start CPR but the nurse just froze and kept repeating 'wake up' to Leila," Toula Porter says of the moment her daughter suffered an anoxic brain injury.