Help us raise money for Benji’s Medical Van!

Hello,

My name is Cassidy Sipe and I'm creating this fundraiser for my 7-year-old son battling a terminal condition called LMNA-CMD (LMNA-Congenital Muscular Dystrophy). Benji was born 08/04/2017 and was always small but hit his milestones on time. Our journey started in July of 2019 when he injured his ankle getting off the couch which turned out to be coincidental with symptoms of his condition. We were told by his previous pediatrician that he would grow out of it, it was just a sprain. His injury was a symptom of his condition we didn't know of yet. As his walking declined we were told it was bilateral club foot and started physical therapy at home via zoom. It was a battle, he was hurting as his feet and body didn't want to stretch as it was supposed to. I had another baby boy in December 2019 and went with a different pediatrician just in case we were told the same thing about an unknown condition. As we saw this new pediatrician I switched all 3 kids to be seen by her and took Benji in where she IMMEDIATELY sent us to Loma Linda specialists to find out why this was all happening. We have an amazing team of specialists that I couldn't be more grateful for. At first they thought it was duchennes muscular dystrophy which could be fatal by 2 years old. Thankfully it wasn’t. Every test came back negative and the more we did it was negative until recently. We did casting to his feet to bring him to a natural position and then did surgery to lengthen his tendons in both feet. We've been doing PT, OT and speech therapies constantly. Unfortunately with this condition, his muscles get weaker faster than they get stronger. His condition specifically affects his heart and neuromuscular system. At the end of 2021, we were approved to CCS (California Children's services) which has helped get him a lot of his equipment. Benji got his first wheelchair in January of 2022 and it has been amazing. He also received his gait trainer, bath seat and stander! We've continued therapies to keep him at his stable self and to try and slow his weakness. We got his official diagnosis on 11/18/2022 after years of genetic testing. His condition is 1 in 1,000,000 children and very rare. Unfortunately, it is terminal and we want him to be as happy and comfortable as he can be. We are in the process of upgrading his manual wheelchair to a powerchair which is amazing for his independence. We are looking to our family, friends and community to help raise the funds to get him a converted wheelchair van so he can just get right in like everyone else and still have room for our other children. We are constantly traveling to appointments from the Coachella Valley to Loma Linda and other surrounding locations. We currently have a 5-seating Kia Sportage that cant hold all of his equipment and it's very important that were able to travel with his equipment as his condition worsens. We are so grateful for any donations as we continue this journey and if you've ever met Benji you just know how happy and loving he is and how he doesn't let this affect him.

Thank you for reading our story and helping