Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

 

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  Hello! My name is Jax Joseph Steinberg and I have CS Type 2, also known as COFS. I was born September 8, 2013. My Mommy, Daddy and big brother were so excited to meet me when I was born. To everyone's surprise, I was teeny tiny, weighing in at 4lbs and 9oz and only 16 inches long. But what really stood out was my amazing hair! I had lots of visitors on my first day and everyone was so happy to meet me! But soon, I started to not feel very well. My liver wasn't working right, I wasn't feeding well, my blood sugar was very low, and I could not regulate my oxygen levels by myself. I was moved to the NICU where I stayed for 11 days.
While there, I met a lot of doctors who found that I had hearing loss in both ears and cataracts in both eyes. Luckily, we met the right doctor and he committed a lot of time into researching my symptoms. When I was just six days old, he talked to my Mommy and Daddy about Cockaynes Syndrome. After I went home, I was doing well. I had gained some weight, was feeding well out of a bottle and was regulating my oxygen all by myself. I had to take medicine to help my liver and blood sugar but I was very happy to be home. In the first few months of my life, I had a lot of triumphs as well as took a few steps backwards. I had my cataracts removed and received glasses and contacts too! But my feeding difficulties returned and soon I had to have a g-tube placed in my belly.
I still struggle today with my feeding but my Mommy stays home with me all day to make sure that I get what I need. We go to a lot of doctors visits but everyone always seems so happy to meet me! My big brother Gage, is my biggest fan, always wanting to hold me and kiss me. While the road ahead will be tough as my body ages and my neurological function diminishes, I continue to always be happy and bring happiness to those around me.
I know my parents are sad that I won't be around for long, the average life expectancy for a kid like me os only a few years old. But I know that in those few years, I will make a big difference. I already have my own website, foundation and a huge following all over the world. I, like many CS kids before me, will have a lasting legacy in this world. I believe that my life is the part of a grander plan to help other children and families in the future. I am already participating in multiple research studies so that doctors and scientists can learn more about Cockayne Syndrome and hopefully one day develop a medicine that can help other kids like me not hurt everyday and be able to not only live, but love a little longer.

Jillian Steinberg

Jax's Journey
www.jaxsjourney.org

Jax Steinberg, Our little friend won his fight against Cockayne Syndrome and is now free to run and play in heaven.

   
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