Slo-Mo Option

I consider myself a fast paced person.  I make lists, I check them off, I take too much on at once, I multi multi task, and when I exercise I do yoga to slow myself down.  And then I crash. Since Jack was diagnosed I have been constantly teaching myself to be SLOW and to … 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

The Gift.

As the school year wraps up I always find myself turning inward and recognizing my mixed emotions, so different from other parents as they pick up their child on that last day. Most parents reflect on their child’s growth from fall to spring, over and over you hear “he has grown up so much” or … Continue reading

May 15th, MPS Awareness Day!

Please wear purple this Thursday, May 15th, to celebrate Jack. May 15th is International MPS Awareness Day, and we hope that we can get as many people possible to wear purple and share Jack’s story. Let’s work together to spread the word about MPS, pushing us closer to more treatments and a cure! On Thursday … Continue reading

Hot Topic – Shire needs to move forward

Boston Globe – FDA stance. http://www.bostonglobe.com/business/2014/04/04/fda-commissioner-calls-for-new-era-partnership-with-biopharma-industry/8676GZuMw8oEqaXt2HmkmK/story.html CNN – compassionate use. http://edition.cnn.com/2014/04/05/health/cohen-compassionate-use/index.html?sr=sharebar_facebook Compassionate usage has been a hot topic, these two articles were published this week. Come on Shire jump aboard the compassionate, caring, and humane company train, help all patients.

smiles through sadness and fear

Will the sadness ever go away? No I say, but I try like hell to enjoy the time with Jack even when I want to curl up in a ball and wish it would all go away. The past months have been filled with fighting and hoping and fighting to be let down. To then … Continue reading

It can be done, pharma can be heroes.

Earlier this week I was sent an article, it soon spread over social media and news. ‘Drug company not allowing access to a drug that could save a 7 year old boy.’ My heart ached so I reached out to his mom to let her know I was living this nightmare too. I shared my … Continue reading

The Sunday Paper…

Quick Update… We continue to share our story with the media. Yesterday our story was posted online and today our story was featured on the front page of the Chicago Sun-Times. We are receiving a lot of feedback and support! Social media, specifically Twitter and Facebook have photos of Jack plastered all over it. It … Continue reading