A West Kelowna family is fighting to change the life of their three year old son, Benjamin.
Benjamin and his twin brother, Alexander were born 11 weeks early through an emergency c-section. Alex weighed 2 pounds and Benjamin weighed 2.5 pounds at the time of their birth. Within 12 hours of their first breaths, the family was on an emergency jet from Kelowna General Hospital to the B.C. Women’s Hospital in Vancouver.
“They were too little to bottle feed or breastfeed yet, so they spent two months in the Neonatal Intensive Care Unit on oxygen and feeding tubes while we worried at the Ronald McDonald house,” said Stephanie Weller in an open letter. “After 75 days in different hospitals, we finally brought them home. Then we started to notice Ben’s muscles were developing differently.”
During their six-month check-up Ben showed three red flags signalling a traumatic birth brain injury, cerebral palsy. An ultrasound determined that there was damage to the front part of his brain. Ben was diagnosed with spastic diplegic cerebral palsy that affects his arms and legs making them stiff and contracted and permanently affects muscle control and coordination. There is no cure for cerebral palsy.
“Our physiotherapist said it’s like if you have an extremely tight elastic band around your legs and hips always trying to snap them back together, that is what Ben feels when he is trying to move,” explains Weller in the letter. “We were devastated. I remember thinking how can this happen to such a little child. He didn’t even get a chance to feel what running would be like, or to chase his brother around. We had been through so much and just when we thought it was all getting into some normalcy, our world was turned upside down.”
Weller has some hope after finding a doctor in St. Louis, Missouri, U.S. who offers surgery that has helped children with cerebral palsy. Dr. T.S. Park offers a surgery that has helped children in the past with cerebral palsy after he invented a procedure that uses electricity to pinpoint the nerves that are damaged to the brain by opening a patient’s spinal cord, cutting the nerves that connect to the damaged part of the brain to the spastic muscles.
If approved the family will take flight once again and spend four weeks in St. Louis including a seven day stay in the hospital and three weeks of inpatient therapy before returning to Kelowna for a year of intensive rehab.
Weller says that Ben is an excellent candidate for the surgery and that he is already surpassing milestones they were told he could not be able to.
“We hope to hear from St. Louis in the coming weeks if Ben is accepted,” said Weller in her open letter. “We just want to give the best to such a wonderful little boy, so he can walk like a normal three-year-old, kick a soccer ball or hit a baseball and run around the bases.”
Weller says she wanted to share her story in the open letter to help families that are going through similar experiences to feel less alone.
“It’s helpful to know you are not the only ones,” said Weller in an interview with the Kelowna Capital News. “Today with social media everyone’s pictures are beautiful but there is so much behind those pictures. It’s time to have the real conversation about what is going. Not everything is rainbows and butterflies, I am hoping that there will be greater acceptance for those struggling.”
Weller and her husband, Dallas have received overwhelming support since she typed her open letter and looks forward to sharing news of whether or not Ben is accepted for the surgery in the next few weeks.
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