Posts tagged with hunter-syndrome

I Killed My Son…and Other Confessions

Posted Saturday July 18, 2015 by Melissa

  I killed my son. That’s what a man wrote to me...

  I killed my son. That’s what a man wrote to me this morning. He asked me to think about it. Well, I’ve thought about it, and I have some...

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Why My Son Doesn’t Want to be a Fireman… or a Doctor… or a Teacher

Posted Friday June 12, 2015 by Melissa

  When I tell my lunch companions that my son doesn’t want...

  When I tell my lunch companions that my son doesn’t want to be a fireman, they ask, “Why? Is he scared of fire?” chuckling a little and waiting in...

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Project Alive - #WhenIGrowUp

#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...

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#WhenIGrowUp I want to be…

Inside a Rare Disease Clinical Trial – #HunterSyndromeLive

Posted Sunday February 22, 2015 by Melissa

Since 2011, once a year, Case Hogan travels to Chapel Hill, NC...

Since 2011, once a year, Case Hogan travels to Chapel Hill, NC for an annual clinical trial visit. It is 11 days of travel, physical testing, cognitive testing, infusions, procedures...

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Inside a Rare Disease Clinical Trial – #HunterSyndromeLive

Who is Smart Enough for a #RareDisease Clinical Trial?

Posted Tuesday October 14, 2014 by Melissa

The Phase II/III Shire intrathecal idursulfase clinical trial requires a child to...

The Phase II/III Shire intrathecal idursulfase clinical trial requires a child to test between a score of 55 and 85 on the DAS II neurocognitive assessment (essentially, an IQ test)....

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My New Year’s Resolution is…

Posted Saturday January 04, 2014 by Melissa

New year’s resolutions are a staple of our society. We resolve to...

New year’s resolutions are a staple of our society. We resolve to lose weight. To get organized. To spend less. To be unplugged. I resolve to save lives. Now, I...

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OPEN LETTER to Dr. John Leong Chi-yan and the Hong Kong Hospital Authority re: Access to Idursulfase for the Tang brothers

Posted Tuesday November 26, 2013 by Melissa

**SIGN the Change.org petition to support the Tang brothers!** OPEN LETTER to...

**SIGN the Change.org petition to support the Tang brothers!** OPEN LETTER to Dr. John Leong Chi-yan and the Hong Kong Hospital Authority re: Access to Elaprase/Idursulfase for the Tang Brothers...

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Path to Diagnosis: Through an ENT?

Posted Saturday November 23, 2013 by Melissa

We all have different stories to tell about our child’s path to...

We all have different stories to tell about our child’s path to a diagnosis, whether it be for MPS or another condition. For rare diseases, often that path is long...

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Important new data and disclosures re: Shire’s Elaprase

Posted Friday July 19, 2013 by Melissa

Most of us probably don’t read that folded, fine-print enclosure that comes...

Most of us probably don’t read that folded, fine-print enclosure that comes stuffed in boxes of medicine, even if the medicine is Elaprase, one we give to our children for...

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Intrathecal Trial Update – Words on a Page

Posted Monday February 18, 2013 by Melissa

It is quite strange to see the last few years of your...

It is quite strange to see the last few years of your life boiled down to a few paragraphs of text and a line on a chart. It is even...

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Hunter Syndrome 2.0

Posted Friday December 07, 2012 by Melissa

I had a great conversation a few months ago with my friend...

I had a great conversation a few months ago with my friend Chris Dutcher, an adult with Hunter Syndrome. Now if you’re a friend who may only know Case’s “version”...

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It's a New Day

Normal isn’t necessary

Posted Monday November 07, 2011 by Melissa

We’ve had a lot of questions surrounding Case’s current abilities since entering...

We’ve had a lot of questions surrounding Case’s current abilities since entering the clinical trial. People hear that he’s doing really well and wonder, “How well? Is he normal?” We’ve...

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Anatomy of an Intrathecal Clinical Trial Visit

Posted Friday October 28, 2011 by Melissa

Now that we only have 4-day visits instead of 9-day visits, things...

Now that we only have 4-day visits instead of 9-day visits, things seem to go much more quickly. There’s definitely time for some fun stuff (less now that the trips...

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Advocacy Series: Advocacy in 4 Steps

Posted Monday October 24, 2011 by Melissa

I recently spoke at an MPS family meeting about advocacy in different...

I recently spoke at an MPS family meeting about advocacy in different contexts and was asked by several families to compile the presentation and slides and share them. Since the...

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Advocacy

Fundraising, gala style: Once Upon a Cure, part I of our interview with Deb Purcell

Posted Tuesday October 18, 2011 by Melissa

Meet Deb Purcell, the amazing mom to Trey, age 7, with MPS...

Meet Deb Purcell, the amazing mom to Trey, age 7, with MPS II. Deb is a tireless advocate and fundraiser who graciously granted this interview while she sat in North...

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Therapy Thursday: Sensory Integration and Sensory Diets

Posted Thursday October 13, 2011 by Melissa

Conspicuously absent from most literature about MPS is any mention of the...

Conspicuously absent from most literature about MPS is any mention of the sensory integration challenges that many of our children face. Prior posts discuss using weighted toys, blankets, and garments,...

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Case loves hanging out