Summer Time

Howdy & Happy Summer! The Fowlers kicked off summer with a wonderful beach vacation close to home.  Staying close to home is becoming a necessity with Jack’s care.  Not to mention we no longer travel light!   This was our first family plus another family vacation.  It was beyond special for us, and hopefully an annual … Continue reading


So yesterday Jack underwent Gtube surgery  as he begins to lose the ability to chew and swallow.  By far one of the hardest transition as Jack has progressed in this disease over the years.  He has tolerated the liquids and currently he is receiving formula feeds.  His body, so far, is doing pretty well.  He … Continue reading

Progression Progression Progression

Progression Progression Progression

It’s been awhile since I last updated my blog. I’m happy to share that while I was away I have realized 3 important things about myself… Well I have learned more then that but I won’t bore you with the facts about finding out that I can go all day with food in my eyebrow … Continue reading

Project Alive is HERE!

I vividly recall the day Jack came home from the hospital…  as we walked to the car the NICU nurse turned to me and said, “Jack Teagan is a strong name, he will be whatever he wants to be when he grows up.”  I thought to myself that he would be a doctor, a lawyer, … Continue reading

Project Alive #WhenIGrowUp

Project Alive #WhenIGrowUp

Hello Jack Followers! It is very important time for all of us to come together to help save Jack! On June 10th,  we will be launching a campaign to fund the remaining portion of gene therapy research. WE ARE ALMOST THERE! In order to make this campaign a HUGE success we need ALL your help … Continue reading

more than words

It’s been a long 5 days of not hearing “mom”. It’s one of the last words that comes from your mouth every so often and I know it too soon will be gone.  I won’t hear your voice again, its pains me to think of this, it brings me great despair that can not be described. … Continue reading


Here are a few statistics and facts to illustrate the extensiveness of the rare disease problem worldwide. There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% … Continue reading