Hi, my name is Jack Fowler. You can read more about my medical journey at www.caringbridge.org/visit/jackteaganfowler
My mom, Jamie, started this blog site to help spread the word about Hunter Syndrome and to share updates, photos, and videos of what’s going on in my world. I am 5 years old and have an ultra rare disease. I was diagnosed at 16 months of age when my parents kept wondering why I wasn’t developing age appropriately and why I couldn’t sleep through the night. My ENT doctor pegged the fact I had a lysosomal storage disease, and although he thought it was Hurler Syndrome or MPS I, we found out 2 weeks later that it was Hunter Syndrome, MPS II. My life has been eventful – filled with surgeries, infusions, trials, and therapies. Through it all I still continue to smile.
Here's Jack! 
Congratulations on your successful continued efforts toward J&J’s renewing of their commitment toward an Elmiron® clinical trial. With your help, we’re all making it happen!
Can we start a change,org petition to get Shire on board? I am local and would be happy to help in any way I can. I can’t imaging going through what your family is going through. We have 2 boys of our own.
Please let me know.
In Oregon, we’re praying for you Jack and your family. I’ve signed your petition and have asked my friends to do so as well. To your mother, thank you for sharing your compelling story and your beautiful child’s journey.
Thank you Jane!
loads of love in stars for you dear jack you are litle star of maa mary loveyouuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu so much big hugs n kisses you are precious n special love you so much muchhhhhhhhhhh
Have you thought about trying the cannabis oil (Charlotte’s Web)? http://cannabissativa.com/2013/12/josh-stanley-at-tedx-boulder-on-cannabis/ Not sure if there would be benefits but in this video it touches upon the fact the oil is assisting people with all types of diseases. This TEDX Talk is a must watch! Maybe possibility a glimmer of hope for little Jack.
Yes there is discussion amongst your community, especially for the kids who suffer from seizures. Thank you for sharing!
Here is the actual YouTube video https://www.youtube.com/watch?v=ciQ4ErmhO7g
My thoughts and prayers are with Jack and his family. I forwarded Jack’s story to Ellen DeGeneres’s website. She is an hugh advocate for the “little guy”. Also, President George H.W. Bush and Barbra Bush lost their 3 year old daughter to Leukemia, there might be some political support here from the Bush family.
Hi Jamie, I don’t know really where to start. Today was such a horrible day for me when my daughter told me that my Grandson, my heart that he is was diagnosed with hunters syndrome. From what I’ve researched in a short period of time is that 200 children are stricken with this horrific disease. I’m lost as to where to find individuals in my daughter’s area so she and her boyfriend can have a support group with others to share their information as well as have eachother to find some form of comfort in. My heart is so saddened, but I must be his and her advocate to do whatever, however I can. Please help with ANYTHING.. Info, direction and such. I read your story today for the first time and it made me so very sad then angry as to how pharma can do nothing while Jack suffers. From one Grandma to a mommy of an angel.. Stay strong, I will too.. I have to, we have to!! Thank you for reading God bless you all.
Hello Evelyn. Please feel free to contact me or have your daughter contact me. I will send you my info.
Take care and sending a BIG hug your way!
Dear Jamie, I read your blog and am heartsick for you, Jack and your family. I feel so selfish and foolish as I came home from work yesterday feeling so unfortunate to have to go to my job (RN at a wound clinic). My youngest dtr was diagnosed with Aspergers Syndrome at 3 y/o and I felt that was so overwhelming, to have your beautful baby diagnosed with a life threatening disease is unfathomable. I wonder how you do it. I read that you say some days (most) you just push through because you have to. So terrible, so heartbreaking, so unfair. Please know that I am thinking of you all and hoping so much for good news, a bright spot, anything positive. My heart aches for you and I don’t know what else to say.
Thank you for stopping by and reading my blog. As you can appreciate special children bring so much light and gifts into the world. Couldn’t imagine life without Jack! I hope your daughter is doing well!
There are about 10 different trials in this area, so please let me know if I can help facilitate any introductions on Jacks behalf.
There is only 1 clinical trial for Jack and he does not qualify.