Posts filed in Understanding MPS

Do you ever wonder why rare disease parents spend so much time on the phone?

Posted Monday February 01, 2016 by Melissa

I’ve recently had several billing problems with my son’s specialty pharmacy. This...

I’ve recently had several billing problems with my son’s specialty pharmacy. This is not uncommon in rare or chronic diseases. Pharmacy problems. Insurance problems. Phone calls. Documentation. Repeat phone calls....

Read More »
Do you ever wonder why rare disease parents spend so much time on the phone?

#WhenIGrowUp I want to be…

Posted Wednesday June 10, 2015 by Melissa

Guest post by Geraldine Renton, mom to Ethan (affected by Hunter Syndrome)...

Guest post by Geraldine Renton, mom to Ethan (affected by Hunter Syndrome) from GeraldineRenton.com: ————– Project Alive What is Project Alive? In the simplest of terms…it’s a chance for boys...

Read More »
#WhenIGrowUp I want to be…

The Honest MPS Dictionary

Posted Thursday April 02, 2015 by Melissa

There are terms that MPS or other rare disease parents use that...

There are terms that MPS or other rare disease parents use that are just understood, no explanation needed. We use them and they carry such information and emotion that are...

Read More »
The Honest MPS Dictionary

To the Child Who Says Hello

Posted Friday March 20, 2015 by Melissa

Everyday I walk my son into school. Sometimes I’m running to catch...

Everyday I walk my son into school. Sometimes I’m running to catch up with him, sometimes he reaches for my hand and we look like any “normal” parent and child...

Read More »
To the Child Who Says Hello

Bittersweet Birthdays of Rare Disease

Posted Thursday March 12, 2015 by Melissa

For most MPS families, and many of those in other rare diseases...

For most MPS families, and many of those in other rare diseases as well, birthdays are very bittersweet events. What is meant to be a celebration is simply a reminder...

Read More »

The “Curse” of Rare Disease

Posted Monday February 09, 2015 by Melissa

Our children don’t have to have the same rare disease for parents...

Our children don’t have to have the same rare disease for parents to relate to one another. One moment we had a wonderful child… and the next moment, he’ll never...

Read More »

How do you grieve? I cut myself out of a tree.

Posted Friday January 23, 2015 by Melissa

After Case was diagnosed in 2009, I pulled a lot of weeds....

After Case was diagnosed in 2009, I pulled a lot of weeds. I pulled thorny weeds, I pulled grassy weeds, I pulled weeds in the hot sun, but I especially...

Read More »

A Letter to the “Before” Me

Posted Monday November 24, 2014 by Melissa

Dear “Before” Me, You don’t realize that you’re living in the before....

Dear “Before” Me, You don’t realize that you’re living in the before. That’s okay. In fact, that’s wonderful. Life is beautiful right now. Busy, but beautiful. Your children are always...

Read More »

Forgetting, and not

Posted Wednesday November 12, 2014 by Melissa

Four years ago, we had a book of photos of family members...

Four years ago, we had a book of photos of family members that was used as part of Case’s IEP. We didn’t want him to forget who the people were...

Read More »

Why did I wear the beads?

Posted Saturday September 13, 2014 by Melissa

I’ve had several people comment about the beautiful blue beads I’ve worn...

I’ve had several people comment about the beautiful blue beads I’ve worn around my wrist each day at the Global Genes patient advocacy summit. I doubt they considered that they...

Read More »

Rare Disease Clinical Trial Recruitment – What’s the Holdup?

Posted Monday July 28, 2014 by Melissa

For some parents, as soon as their child is diagnosed with a...

For some parents, as soon as their child is diagnosed with a rare, progressive disease, the first thing they do is research whether there is a cure, a treatment, or...

Read More »

AbbVie and Shire – A Rare Match?

Posted Saturday July 19, 2014 by Melissa

Ever since AbbVie’s initial approach to Shire became public, our Hunter Syndrome...

Ever since AbbVie’s initial approach to Shire became public, our Hunter Syndrome community has been watching and waiting. We’ve always known Shire was a candidate for an acquisition, although its...

Read More »

A Diagnosis Story

Posted Monday July 14, 2014 by Melissa

Every child or adult with a rare disease has a diagnosis story....

Every child or adult with a rare disease has a diagnosis story. Some are long and traumatizing, some are short and miraculous, and some are just so very sad, replete...

Read More »

Right to Try? More like redundant begging.

Posted Monday June 16, 2014 by Melissa

Colorado’s “Right to Try” law has made headlines over the past months,...

Colorado’s “Right to Try” law has made headlines over the past months, prompting questions in my circles about whether it could help our rare disease families. First, let me note...

Read More »

Uncontrollable

Posted Sunday June 01, 2014 by Melissa

Last week, I had a not so gentle reminder that this disease,...

Last week, I had a not so gentle reminder that this disease, and the medical trauma caused by attempting to treat it, still have a strong grip on my child....

Read More »

Flexibility + Medical Trauma + Miracles = Clinical Trial

Posted Wednesday April 02, 2014 by Melissa

Not all clinical trials are the same – some involve just a...

Not all clinical trials are the same – some involve just a single blood draw, or interview, or procedure. But others, like the MPS II intrathecal trial, are very demanding,...

Read More »

Death is My Neighbor

Posted Thursday March 20, 2014 by Melissa

* An essay inspired by the struggles of our MPS II community...

* An essay inspired by the struggles of our MPS II community and the loss of the boys we love so dearly Death is My Neighbor He comes a knockin’...

Read More »

Dear child who will never be “normal”

Posted Wednesday January 29, 2014 by Melissa

Dear child who will never be “normal,” I love you. Let me...

Dear child who will never be “normal,” I love you. Let me say that first, because it is the most important. I love you as you are. As you grow...

Read More »