About Jared
and his disease.
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Jared’s life is a story of hope, courage, determination and the will to live. His challenges have enabled us to appreciate and live life to its fullest and that while material things are nice, they are not necessary or important.
Jared was officially diagnosed with Duchenne Muscular Dystrophy late February 1994 at the age of 5 1/2 years. We had noticed that his gross and fine motor skills were behind that of other kids his age. After consulting with many different doctors, Jared was referred to a Pediatric Neurologist in San Francisco, who ordered DNA testing. Six weeks later, we received the news that would forever change Jared’s world – he had an incurable disease; Duchenne Muscular Dystrophy.
Jared's motor skills deteriorated over the next few years until he reached a point that he could not walk without the use of a walker. At this point he was in the 3rd grade. About a year later when he was in the 4th grade, his legs could no longer sustain his weight. Jared started to use a manual wheelchair, eventually getting a motorized "power" wheelchair so that he could have the freedom to drive himself on his own.
All through Jared's life, he has had a happy, positive outlook; never feeling sorry for himself. He always strived to do his best in school despite his physical limitations. His favorite activity is his artwork. He enjoyed drawing and always drew in great detail. Jared was on a bowling team and did quite well and won numerous trophies and scholarship money.
During Jared's high school years, he had increased difficulty in eating and doing many other daily living tasks. He was determined to do his own homework no matter how long it took him to complete it. During his senior year, he developed bronchitis and pneumonia. He was hospitalized in November 2006 at the age of 17. While in the hospital, his condition deteriorated to the point that he had to be transferred to the Intensive Care Unit and was intubated and placed on a ventilator. In late November after three weeks of being in the ICU, he had a tracheotomy performed. The doctors also put in a g tube so that his nutritional needs would be met. He nearly died during that operation but due to his strong will to live, he pulled through. In December 2006, Jared was transferred to a sub-acute facility that specializes in weaning people off ventilators. This facility was located 100 miles from home. Throughout this time period we were making daily 200 mile round trips to see and support Jared. In April 2007, due to deteriorated muscle strength, it was determined that they were not able to wean him off the ventilator. We then transferred him to a sub-acute facility that was 70 miles away from home.
For over two years Jared endured numerous surgeries, deep painful pressure sores, infections, fractures, pneumonia and the emotions of not only going through all of the physical pain, but having to be away from home for so long and having to depend on strangers to care for and help him.
Jared’s determination, courage and will to live has been an inspiration to everyone. Even though he was seriously ill and in the hospital he continued government and economic studies so he would be able to receive his high school diploma. Two days before graduation he had to have gallbladder surgery, so unfortunately he wasn’t able to physically be there to receive his diploma but as we accepted it for him, his classmates gave him a standing ovation.
We are happy to say there is a happy ending, after a lot of work for all of us in the family to train for trach, ventilator, medications and G/J tube care, we were finally able to bring Jared home on December 8, 2008. Jared still has a long way to go to get his life back to “normal” but he is working hard to accomplish this goal too. We go out to do things and hopefully he will be able to work on his art again. We face many challenges every day, but it is worth it just to have him home with us again. Although he still has a tracheostomy tube, is ventilator dependent, and has a gastrojejunal tube, we are lucky to have wonderful nurses and doctors to assist us. We are also grateful for the support of our family and friends. Jared is very grateful and happy to be back at home.