Jaxon Sloat , age 5, of Macomb, Michigan, is described as a vibrant, determined little boy. He was born at 30 weeks and, as a result, he has cerebral palsy. At diagnosis the family was told Jaxon wouldn’t be able to walk or talk but he worked hard over the past few years and has proven many people wrong. He has had setbacks along the way, but his mom JoAnne Sloat, says that doesn’t slow him down.
In May of 2019, he was also diagnosed with a hypothalamic hamartoma after experiencing severe cognitive delays. A hypothalamic hamartoma is an extremely rare benign tumor that forms on the hypothalamus. He wasn’t able to process what people were saying for 20-30 seconds, was experiencing rage attacks, seizures and vision loss. He was the first patient to have laser ablation for the tumor at Children’s Hospital of Michigan. He spent almost a month in the ICU following surgery because they couldn’t regulate his sodium levels.
“It has been a long difficult road,” said Joanne.
Surgery has left him with central diabetes insipidus (DI), a condition where the hypothalamus no longer secretes vasopressin, the antidiuretic hormone that regulated the body’s fluid balance which can result in blood sodium imbalances. Jaxon’s doctors say the presentation of his DI “doesn’t fit the mold.” His sodium levels continue to be high and low quite often, making it difficult to manage. He also has hypothalamic obesity, precocious puberty and hypothyroidism as a result of the surgery. JoAnn says having a blood analyzer at home will help keep Jaxon safer because she can keep a close eye on his sodium levels.
Despite the challenges, Jaxon is training for his first 5k, which he runs holding mommy’s hand so he doesn’t fall face first because of his CP, and has lost 10 of the 30 pounds he has put on since surgery.
“Our little guy is determined to beat it all,” said JoAnne. “He is our hero. Always facing life with a smile that lights up the world and a positive attitude.”
The Raymond A. Wood Foundation shipped Jaxon’s blood analyzer this week. Now more than ever, it is important to keep our pediatric brain tumor patients that suffer from this condition out of the labs and hospitals to keep them safe. Many of these children fall in the COVID-19 high risk category for their various conditions. We thank you for your continued support of this program to help kids like Jaxon.