Axel's Fight Against Sturge Weber
Soon after the arrival of Axel one of the many pediatricians in the operating room rushed to Tricia’s bedside and told her and Justen that their son had a birth mark on his face, and that could mean he may have a serious problem with his brain. They both took the news in stride and carried on welcoming their two new boys into the world. Doctor after doctor examined him and assured Tricia and Justen that Axel would not be in the small percentage of children who are affected. Their happy new baby continued to grow and progress as any other baby would. Axel had an MRI done in December 2014 to be absolutely certain he did not have any issues related to his birth mark on his face. The results that came back were not what they were expecting.
Tricia and Justen would learn that their son Axel was diagnosed with Sturge Weber Syndrome. One of the complications of this rare disease is the numerous amounts of seizures that can leave lesions on the brain. Axel’s neurologist specializes in this rare condition, and they were told that their beautiful baby boy’s MRI showed a severe case and to expect the seizures at any time. As time progressed Tricia and Justen noticed other symptoms of Sturge Weber affecting Axel, they all went about their days as normal as possible and enjoyed their now complete family.
It was February 2015 when Axel would begin the long battle with Sturge Weber. He had his first seizure that would eventually lead to more and on a more frequent basis. Tricia & Justen took Axel to Boston Childrens hospital where some of the best doctors in the country specialize in this disease. After months and months of hospital trips and doctors appointments they found themselves back in Boston for an extended amount of time. June 2015 Axel had a seizure that lasted 29 minutes long and stopped his breathing. His team of neurologists have exhausted all options for treating the seizures with medications, as his seizures were now occurring in his sleep and life threatening
With the seizures becoming worse and the neurologists opting to stop medications the next step in Axel’s journey is surgery which is scheduled for July 22, 2015. Axel will undergo a hemispherectomy which is a very rare surgical procedure where one cerebal hemisphere (half of the brain) is removed or disabled. This will be a long road to a full recovery for Axel and his family.
Axel has brought so much joy to his family, his smile is infectious, and he lights up a room with his laughter. It is our turn to light up Axel’s world. This fund is set up to help with the medical costs, travel, family expenses, and the physical and occupational therapy that he will endure after his surgery. Axel and his family have blessed so many people now it’s our turn to bless them. To learn more about Sturge Weber Syndrome please visit www.sturge-weber.org Thank You In Advanced For All Of Your Support!
Prayers heading to Axel. Thoughts and prayers heading to all of his family.