Jack's Story

Published: 11/30/2013

Jack's Story

d99e22ee5acd11e3bdd112ccf407965c_8Hi Everyone,

Late last week, I received a note from Jamie Fowler, a fellow MPS parent who lives in the US. The email was entitled “Help!” and, needless to say, left me heartbroken.  It was a plea for help, for support, a last ditch effort to anyone listening to help save her son, Jack.  Jack suffers from MPS II and has been bravely fighting the disease as best he can.  Of late, the  disease has been relentlessly attacking Jack’s brain, and he has been regressing at a rapid pace.

To any parent, to any decent human being, this is heartbreaking.  Please read Jamie’s email below, and then continue reading to see how you can help Jack receive the treatment he so desperately needs.

From Jack’s Mom

Another sleepless night…

Tonight I found Jason on the kitchen floor sobbing. I’m in bed ready to tackle sleep and trying to contain my emotions, then I hear the sound of my solid rock husband Releasing.  He had found pictures of our spunky Jack that he hadn’t seen for awhile. Jack getting into the cabinets, cooking and mixing.  Jack playing the flute and drums. Jack playing in his fire station set. Jack exploring in the sandbox.  Jack dancing and singing show tunes.  And the memories go on.  It’s incredibly challenging to share and exposure you ladies to what I’m dealing with at my end.  You both go to bed knowing your sons have a chance at life, which lightens me to know, but inevitably I end up going to bed crying from watching my son lose another skill set, a step closer to death.  I share bits and pieces but the reality is I struggle every moment of every single day with fear. Fear of this final phase of regressing, losing ALL his skills.  Boy do I feel alone.   Yesterday Jack stared at me with spoon in his hand, no idea what to do with it. His favorite entertainment, the iPad, he is no longer able to operate it. The list goes on and on.  I put on a smile for him and Juliet and “pretend” tomorrow will be better only to find tomorrow is always worse. He stared at me last weekend while sitting in the bath, boy do I miss him being feisty -yelling and splashing me, now he sits and stares as if he wants to do or say something to me but just can’t.  It’s way beyond heartbreaking.

But back to Jason in the kitchen. After a long hard cry we discussed our sorrow and how we must cope while moving through this horrific phase with no easy solution for help.  And then we both reminded each other our promise we made on Diagnosis Day that we would do ANYTHING and EVERYTHING to make Jack happy and comfortable.  Jason feels failure and I just don’t want to ever look back on this time with what ifs.

Each day is another day Jack is gone.

We know there is drug. We know it is safe. We know Jack needs it!

With a heavy and light (yes both),


image-27We have an incredible team that is committed to moving forward swiftly on behalf of Jack.  We will be doing everything we can to ensure that Jack gets the treatment that he needs.  What is that treatment?  Currently, Shire is undertaking a clinical trial where they direct the treatment MPS II sufferers need directly into the brain.  The results, so far, have been incredibly positive.  Unfortunately, Jack doesn’t qualify for the trial because he has high Intracranial Pressure in his brain - Pressure that would be corrected with the treatment.  A sadly ironic situation, but one that can be overcome.

Currently, we have a site where Jack can receive the treatment.  We have a physician that can administer the treatment, and we’re confident that the Independent Review Board will approve administering it to Jack.  The only thing we need is access to the drug on a compassionate basis.  Simply put, without that access, Jack will die.

And I won’t sit back and allow that to happen.

We’ll need our team over the coming weeks and months.  I hope to work with Shire to develop a plan to collaboratively work together to help Jack.  I’ll drop by here and on our social media pages to update things as they progress.

Hang in there with us, Jack.  We’re doing everything we can to help.

With Love,