My name is Danella Monsman and I am doing this Go Fund Me for some very close friends of mine. Heather Bentley and her 12-year-old daughter Cambrie are faced with obstacles every day due to Cambrie having Spinal Muscular Atrophy type 2. At the age of 8 months, Heather noticed that some of the milestones Cambrie was able to reach like crawling and sitting up were beginning to regress. After being placed in therapy at the age of 9 months and seeing many doctors, a neurologist diagnosed Cambrie with SMA at the age of 18 months.
SMA is a progressive, genetic, neuromuscular disease that causes muscles to become weak and atrophy (waste away) over time. There are 4 types of SMA and are based on the age that the symptoms begin. Individuals with SMA can have trouble breathing and swallowing and can suffer from contractures and scoliosis. Depending on the type of SMA, some individuals will never be able to crawl, walk or sit up unassisted or they will lose the ability to do these things over time.
There is NO cure for SMA, but progress has been made in finding treatments. Spinraza was the 1st FDA-approved treatment for SMA and in some cases was shown to increase muscle function and potentially slow the progression of SMA. Spinraza is delivered into the spine where motor neuron loss begins. Cambrie began Spinraza in 2016 and needed to be placed under anesthesia with each dose. After the 1st 4 initial doses, which are given within the 1st 2 months, Spinraza is given 3 times a year for the duration of the individual's life. In August 2020, the 1st oral med was approved for SMA called Evrysdi. In 2021, Cambrie switched from getting spinal injections to taking this medication by mouth, which will be needed every day for the rest of her life.
At the age of 2, Cambrie started using a BiPAP machine to help with her breathing. Between the ages of 4 and 6, Cambrie faced a lot of complications due to respiratory issues and was also hospitalized for 5 days with pneumonia. Cambrie has also never had the ability to walk and has been in a wheelchair since the age of 2. Over time, due to being in a wheelchair, Cambrie was diagnosed with scoliosis. In June of 2021, Cambrie underwent surgery to help correct her scoliosis. Before surgery, her spine was curved at a 98-degree angle. Rods were placed and a fusion was done, and her curve is now at a 34. Cambrie still has therapy every week to help keep her muscles as active as possible. Cambrie will always need to be seen by orthopedic, pulmonary and neurological doctors throughout her life.
Heather and Cambrie are in GREAT need of a wheelchair-accessible van. Currently Heather is lifting Cambrie in and out of her wheelchair to put her in and take her out of the car. Heather then loads her power wheelchair on and off a rack placed on the back of her car. Cambrie is currently 89 lbs and will only continue to grow. Lifting Cambrie has become difficult and will only continue to place strain on her mother. This puts Cambrie at a higher risk for injury by needing to be picked up. Cambrie is a very polite, smart, funny, and caring young lady who would also like to be out in the community more and be able to visit family and friends. Having a wheelchair-accessible van would allow Cambrie to safely be transported to and from her many doctor appointments, therapy, and would give her the freedom that she deserves!
We appreciate all of the donations and thank you for helping this wonderful family!