Tagged with MPSII

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

Jack turns 7

Jack turns 7 on Sunday, his golden birthday someone says. Golden or not, when time is your enemy it’s extremely difficult to find the celebratory piece to it all. Today I struggle. I always envisioned Jack receiving intrathecal drug by now, his brain stable and all of us going to bed knowing he isn’t regressing … Continue reading

Quick update

I know a lot of you have reached out about what you can do and how to help, our team is slowly but surely getting through the numerous emails and messages that have came through. As we do this, please share Jason’s message to everyone – send emails, post on Facebook, tweet on Twitter, and … Continue reading

Profits Before Patients

Today was one of the most difficult days of my life.  I had to sit in front of a CEO and the VP of Research and Development of Shire Pharmaceuticals to hear my son’s fate.  I am in such awe of what occurred,  I am struggling to even write, so here is a quick summary … Continue reading

Confronting Sorrow

Shire Pharmaceuticals has made the decision that Jack will not be granted compassionate usage of their drug. Also, they won’t consider Jack to be eligible for Phase III of the trial. A group of people met and determined my son’s fate. They opted death over life. “Please recognize that we do not make these decisions … Continue reading

The Ups and The Downs and The Depths of MPS

It’s been an incredibly challenging month for my mind and my heart. A couple of weeks ago Jack went under general anesthesia for a few procedures- ear tubes placement, ABR (hearing test), MRI of the brain and spinal MRI. It marked my 6 year old sons 12th surgery. And by no means does it make … Continue reading

Arrrr!

September 7th marked Jack’s 6th birthday. For the past 6 months he has asked about having a pirate “Arrr” “Birfday Partay”, so after 6 months of counting down, the big day happened. I would say it was a huge success at many levels! First, he was healthy enough to celebrate it! Secondly, we are now … Continue reading

Rewards

Last week marked a year of living in Illinois. And a year since we started attacking Jacks antibodies. Boy has it been a long, hard year but filled with so many blessed moments. My life patterns around Jacks care has consistently presented extreme hardships followed by rewards. My rewards have came in a variety of … Continue reading

Sacrifice

Jack’s body continues to react to his much needed enzyme which means we continue to receive his weekly infusions at the hospital. He remains a trooper, as he leaves his sister who is playing with toys at home to head to the hospital. He is aware it’s summer time as we pass kids who are … Continue reading