Jaxon's Story.

Working in child care it's very rare to come across situations such as these and it hits all of us close to home as each of us have children ourselves. When this family enrolled at Chesterbrook academy we knew life would never be the same. Please take the time to read Jaxon's story.

Jaxon is a 1 ½ year-old little boy fighting a big battle. Over the past 6 months, Jaxon has battled multiple infections. Last December, Jaxon was diagnosed and treated for an ear infection. In March, he was hospitalized after 14 days of decreased appetite and 103-104*F fevers (another ear infection). In April, the fevers returned and his eyes began to shake, so we returned to pediatric clinic. He had a double ear infection, sinus infection and double pink eye. It was an infection overload. Jaxon was transferred to a higher level of care, where he was evaluated by pediatric specialists in neurology, infectious disease and ENT within an hour of arriving. The neurologist ordered a CT, concerned for brain tumors and a brain abscess. Thankfully those results were negative. The infectious disease doctor ordered a lumbar puncture, as he was concerned for a brain infection. Thankfully, also negative. Jaxon was placed on multiple IV antibiotics, and his fevers stopped but his eyes continued to shake. They then placed tubes in his ears in an attempt to relieve some pressure, but 24 hours after his procedure they were still shaking, so they went ahead and ordered an MRI to get a closer look at his brain. And just as luck would have it, his IV went bad the night before his MRI. Jaxon ended up with an IV in his jugular vein, sedated, intubated and on a breathing machine just to complete his MRI. The MRI results reassured the doctors and Jaxon was discharged home with appointments to follow up with all of the pediatric specialists.
During his follow-up, further information regarding Jaxon’s MRI result was received. His white brain matter was that of a 4-month-old. Up until very recently, Jaxon had met all of his milestones. Based on his current brain function, the doctor was extremely surprised Jaxon is functioning at all, because he shouldn’t be. There are three kinds of myelin (white brain matter) disorders. Hypomyelination (not being born with enough myelin) was ruled out since he has met all of his milestones. Delayed myelination was ruled out because the gap was too long (normal is 1-2 months). And the third is demyelination (deterioration). To make things worse, his constant infections most likely advanced the disease. During the visit with his neurologist they called the disease a Leukodystrophy, which is the fancy word for a group of disorders that involve the progressive deterioration of white brain matter. It’s a rare and deadly genetic disease that most severely affects boys. The most devastating forms of the disease appear in early childhood when healthy boys suddenly regress. Symptoms begin with behavioral problems and difficulty concentrating. These symptoms gradually worsen as the white brain matter breaks down and leads to deafness, blindness, seizures, dementia, loss of muscle control and eventually death within 2-5 years. Jaxon’s neurologist referred him to a clinical trial involving genetic testing at DC Children’s hospital to help diagnose exactly which Leukodystrophy Jaxon has. He was accepted into the LeukoSEQ Whole Genome Sequencing study as well as a Bioregistry Project for Unsolved Leukodystrophies the following week. A few days later his labs were sent to California, with results anticipated in early November. There is no cure for this disease; however, there are promising studies in gene therapy being completed in Europe and Asia. Unfortunately, these studies are only for a few selected types of Leukodystrophy, so Jaxon’s entire future will depend on the results received from California.
Currently, Jaxon is still battling infection after infection. His team of doctors is planning on an adenoidectomy and tonsillectomy in an attempt to prevent further infections. While sedated, his ophthalmologist is going to get an better examination of his eyes to see exactly what damage is being done, and if there is any way to correct it. All of the funds raised will go towards Jaxon's future medical expenses and associated costs. All unused funds will be placed into Jaxon's savings account. Our goal is to provide Jaxon the best life possible, for as long as possible. He is a handsome, loving, good-spirited little boy who can use all of the love and support he can possibly get.