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Meet Mason Jenkins
September 18th 2007 -Brand new Mason pictures in the Photo Album!
Mason's Story
Hi, my name is Mason Andrew Jenkins. I am 7 months old and I have something my Mommy and Daddy call “Hurler’s Syndrome”. This website was created to inform others about Hurler’s Syndrome and help encourage families who may have children with Hurler’s. Let me tell you a little about myself. I love to smile and make funny noises. I really like to get kisses from my big sissy. I enjoy getting hugs from family and friends. I especially love to talk so I will share with you my story.
I was born on August 27, 2004 in Boise, Idaho to a proud Mommy and Daddy and a very proud 2 year old sister. I was 9 lbs and 22 inches long, and already a healthy, chubby boy. My parents were thrilled and my sister claimed me as her own baby, telling everyone “my baby” while holding me tight. I failed the hearing tests in the hospital, but “no worries” my Mommy said as I was delivered C-section and sometimes fluid does not get completely released. When I failed my second test I was referred to the Elks where I failed their brain wave hearing test. My parents were informed I had partial moderate hearing loss in both ears. We were all happy it was only partial loss which could be managed with hearing aids. I continued to grow and was generally happy and constantly making lots of little sounds and coos. I especially loved all the attention I was getting from my big sissy. She smothered me with kisses and hugs and I loved it! I then started sounding like a purring kitty when I would breathe so my Mommy took me to see my doctor. We assumed I was just given a gift of the sniffles from my big sissy who loved to give me kisses when she was sick. After several visits in and out of the doctor’s office due to trouble breathing, I finally caught RSV (a really yucky cold in my lungs) and was in the hospital for 3 days. It was at my 6 month follow up appointment to my pediatrician that my head size decided to be off the chart. Mommy and the doctor did not worry though as every part of me was off the chart, I was a big boy! The doctors looked at my brain (they call it an MRI). The MRI came back and showed I had fluid on my brain (the doctor called it mild hydrocephalus) I was glad when they decided that I would not need what Mommy calls a “shunt” put in my head. While I was asleep for the MRI the doctor felt my tummy and thought my liver was larger than what it should be so they wanted to check it out. So I gave them some urine (not very willingly I might add) and some blood to run some tests. My Mommy and Daddy got called into the doctor’s office to be informed that sugar molecules showed up in my urine. Along with the hearing loss, the enlarged liver, the hump on my back and the rattle in my breathing, the doctor said I have Hurler’s Syndrome, a genetic storage disorder. The doctor told my parents that there was not a cure, however a cord blood stem cell transplant could save my life. My Mommy and Daddy decided the best place for me to get treatment is to go to Duke University in North Carolina. This is where I will begin my journey. Please pray for me and my other friends with Hurler’s. We have a long road ahead, but we are full of hope that our journey will be a success story to tell to everyone.
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