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

RARE DISEASE DAY!

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

Love’s Grief

The paradox of life is the that the closer we get to the light, the closer we get to darkness. When carrying the weight of a medically involved, dying child there are many moments of darkness that often shadow the light.  In fact, on a daily basis, regardless of my masked smile I am hurting … Continue reading

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