• Templeton family staying positive in the face of child's rare brain disorder

Patricia Magane of Templton watches her son Axel, 1, play at the family's home. Axel, who is a twin, was born with a rare brain disorder known as Sturge-Weber Syndrome. T&G Staff/Paul Kapteyn
• By Elaine Thompson
  Telegram & Gazette Staff

  
  Posted Sep. 6, 2015 at 5:57 PM
  Updated Sep 6, 2015 at 9:52 PM
  
  

  TEMPLETON - Tricia Magane wants people to know that things are not always what they seem.
  

  The 31-year-old mother vividly remembers taking her three boys to Walmart in Gardner and 1-year-old Axel was hungry. Ms. Magane placed the boy in the shopping cart and propped his bottle up for him to nurse hands-free.
  

  "I can't tell you how many parents gave me dirty looks. Like, 'You let him lay in the carriage like that ... You're making a stupid parent move,'" she said. "In this day and age, parents are on this crazy competition ride, where they judge other parents, not knowing what they're actually going through just because their child looks normal."
  

  Although Axel looks normal like his twin, Bode, and his 2-year-old brother, Colton, he is not.
  

  Shortly after birth, he was diagnosed with Sturge-Weber Syndrome, a serious and rare brain disorder that is characterized by a facial port wine birthmark and neurological abnormalities.  There are fewer than 200,000 cases of Sturge-Weber worldwide, according to Anne Howard, director of patient and family services at the Mount Freedom, New Jersey,-based Sturge-Weber Foundation.
  

  She said it is estimated that three in 1,000 babies are born with the telltale port wine birthmark. Of those, between 8 and 15 percent will be diagnosed with the disorder. There are varying degrees of Sturge-Weber. Some people with the disorder will go on to have mostly typical lives. Others will have various disabilities.
  

  Axel was diagnosed with a very severe case.
  

  Ms. Howard said the disorder, which has probably been around since the beginning of time, was first described by two English doctors in the early 1900s. In 2013, a research team at Johns Hopkins discovered the gene that causes it. That discovery, she said, gave overwhelming evidence and relief that the disorder is caused by malformation after conception.
  

  There is nothing that parents can do to cause it or prevent it. It can't be passed along in a family. There's no record of children in the same family having it. And the disorder cannot be detected by prenatal exams, she said.
  

  Ms. Magane said she had never heard of Sturge-Weber until last year. After having several miscarriages, she and Justen Levasseur, 34, who have been a couple for eight years,  took fertility treatments for two years before having their first son, Colton. When he turned one, they were ready to have another child, took more fertility treatments and she became pregnant with twins.
  

  Moments after their birth at St. Vincent Hospital in Worcester, Ms. Magane said a pediatrician rushed to her bedside and told her one baby had a birthmark on his face which could mean something was seriously wrong with his brain.
  

  "We'll need an MRI at some point, but I have to go," Ms. Magane said she was told before the pediatrician rushed out. The following day, another pediatrician gave them the devastating information about the disease.
  

  "At that point, we said, 'if he has it, he has it. If he doesn't, he doesn't," Ms. Magane said.
  

  The couple was first told that since Axel was meeting milestones, he probably didn't have Sturge-Weber. But, when he was a month or two old, she noticed that his right eye was bloodshot, which meant there was something going on in his brain. The child was taken for an MRI at four months.
  

  Two days later, the prents received a telephone call confirming that their baby did indeed have Sturge-Weber.
  

  "I wasn't shocked. But we were hoping and praying that it wasn't the case," said Ms. Magane, as she played with Axel, a happy and curious baby, on the living room floor of their Baldwinville home. Mr. Levasseur, a quiet man who works long hours as a plasterer, played with the other two boys outside.
  

  After the diagnosis, they immediately met with a neurologist at Boston Children's Hospital, one of the top hospitals in the country for treatment of the disorder. When the doctor looked at the MRI, she said Axel had one of the more severe cases that she had seen.
  

  She said the entire left side of his brain was affected, and that they should expect seizures to begin at any time. Six months later, in February, Axel had his first seizure. He had three more after the family took him to Heywood Hospital in Gardner to stabilize him, and then 25 more within a 24-hour period while at Children's Hospital.
  

  The baby continued having seizures necessitating months of trips back to the hospital. In June, he suffered a seizure that lasted 29 minutes and stopped his breathing. With the seizures becoming worse and doctors having exhausted all options for treating them with medication, Axel returned to Children's on July 22 and underwent a hemispherectomy.
  

  During the rare surgical procedure, the left side of Axel's brain was disabled.
  

  Ms. Magane said since her son's case was so severe and the blood vessels in his brain were so abundant, it was difficult for surgeons to navigate. They hoped they were able to disconnect everything on the left side of his brain. But it's not definite that they disconnected the corpus callosum - a bundle of nerve fibers that connects and aids communication between the two sides of the brain.
  

  "Our hope is he does not start seizing again. If he does, then we hope that they are not as severe as they were," she said. "If they are, they'll have to go back in and disconnect that piece."
  

  The couple has set up a Facebook page to keep family and friends, who are very supportive, updated on Axel at www.facebook.com/pages/Axels-Crazy-Adventure/872071056206219?sk=timeline.
  

  Today, the child has some sight loss and he doesn't have much use of his right arm. Each seizure would result in a setback. Once, he forgot how to sit up; another time, he forgot how to babble. He currently has a feeding tube in his left nostril.
  

  "Most likely he will have some mental delays. But, there's no way to really know," Ms. Magane said. "Because he had this (surgery) so early, there's a good chance the other side (of his brain) will pick up what has been lost. I feel like Axel understands more than we realize and I feel like mentally, he may very well be close to where Bode is. But, because he can't crawl, walk and talk it's hard to judge."
  

  All the while, the family takes what has happened in stride. Never once have they asked "why us," said Ms. Magane, a calm and loving mother.
  

  "'We've never felt sorry for ourselves," she said, attributing her disposition to strong women role models in her family. "As hard as it is, I really feel like they were meant to be with us."
  

  Colton, who turns 3 in November, has become very protective of his younger brothers, particularly Axel. He associates anyone who looks medical with someone who is going to hurt his brother. He has started calling Axel "Axe-Man," after the family substituted that when they sing the Bat Man song.
  

  Colton will tell people, 'Don't hurt my Axe-Man," Ms. Magane said.
  

  Before Axel had his surgery, John's Sport Shop in Gardner made about 100 T-shirts with the Batman logo and the word's Axe-Man on them. Part of the proceeds were donated to the family and some to the Sturge-Weber Foundation. A friend has also set up a Go Fund Me page: http://dt.gofund.me/yh4v4v9hc  or http://bit.ly/1fLh9ZY, to help the family with expenses associated with hospital visits and daycare.
  

  Additional information about Sturge-Weber Syndrome is available at www.sturge-weber.org, or by calling (973) 895-4445.