Ramsi's Story

In September of 2006 Brandon and Diana Reed were living in Las Vegas and expecting their first child any day. Mom who went into labor at 37.5 weeks had a pregnancy without complications and was very excited to begin this new chapter in life.  Ramsi Alex Reed arrived on September 12 after a smooth labor and delivery. The happy parents left the hospital a couple days later with a new addition to their lives. Things couldn’t have seemed more perfect. 

 This new little family would soon realize their seemingly healthy beautiful baby was not progressing the way she should be. Mom noticed pretty early on that something just wasn’t right. Although Ramsi rolled over and sat up at a normal age, she wouldn’t put pressure on her legs to try to stand. With Ramsi being the first child, mom and dad had nothing to compare her progress to. Dad would always calm mom down and tell her everything was fine. 

When she was 9 months old they moved back to Sandy Utah where dad got a new job. This was when they really started thinking something was wrong. She was at an age that she should be crawling and was showing no signs of trying. She felt very limber all the time and when anyone would pick her up she had no strength to help hold herself up.

After her first birthday Ramsi was checked out by Early Intervention (a program through the public school system). They said she was a little behind but that in a few months she would be more efficient. They recommended physical therapy and occupational therapy to help her progress. Soon after they went to Primary’s Rehab and had evaluations. Months later, when she was 17 months old, Ramsi was walking. This was a VERY good day for Ramsi and mom and dad. She started Occupational therapy to help her crawl so although she walked first, she crawled at 18 months with the help of therapy.

Doctors were now telling mom and dad that Ramsi needed to be seen by a neurologist. They recommended this because she was doing a “gowers” motion to help her get from a sitting to a standing position. She was 19 months when they took her to the neurologist at Primary Children’s Hospital. From there they said she needed to see a specialist. The specialist ordered an MRI and a lot of blood work. She then had a muscle biopsy a couple of months after she turned two. This is when they found “ragged red” muscle fibers. The doctor wanted to send the biopsy to Columbia University to have a second look.

This sweet little child all in the first two years of life had been through many blood tests, an EKG, an echo-cardiogram, had her eyes and ears tested extensively, had a muscle biopsy, and been in and our of physical therapy and speech therapy.

This pretty much brings us to where she is today. Sweet little 4-year-old Ramsi was recently accepted into a program where the therapy is better and more advanced. She will continue with this as well as begin some genetic testing to try and find out exactly what mitochondrial myopathy she has.  

We are hoping that by starting this organization we can help raise even a little bit of money to help with the many medical bills the Reeds constantly have piling up. Ramsi needs the therapy and the genetic testing if they want any chance of knowing why this is happening, and what they can do to slow progression or possibly stop it all together. All of this is more than any small family can bare, let alone trying to come up with all the money to cover such extensive therapy and testing.

Other children with diseases such as these have ended up in wheel chairs at a very young age as their muscles slowly deteriorate, while others get so bad so fast that they pass away. Although Ramsi isn’t in as bad of a situation as some, things can change fast. These types of diseases may progress slow or fast, and nobody knows why it does one or the other. Children with this disease also have a hard time recovering from rather simple illnesses such as the flu and common cold which makes every day life that much more challenging. These are all reasons why we feel there is no time to waste. We need to start now in supporting our little Ramsi in any way we can. Every little bit helps and every little bit counts.