Posts tagged with mucopolysaccharidosis

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...

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The Honest MPS Dictionary

Silent Siblings: MPS and special needs can take their toll

Posted Monday May 06, 2013 by Melissa

In so many ways, our lives as parents revolves around the constant...

In so many ways, our lives as parents revolves around the constant needs of a medically involved, special needs child. But what about their unaffected siblings? How do we protect...

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Brothers

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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Intrathecal

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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OUAC-program

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

Newborn Screening for MPS

Posted Wednesday August 24, 2011 by Melissa

Yesterday, the governor of Illinois signed the groundbreaking bill that requires newborn...

Yesterday, the governor of Illinois signed the groundbreaking bill that requires newborn screening for MPS II (Hunter Syndrome) and MPS I (Hurler, Hurler-Scheie or Scheie Syndrome) within an infant’s first...

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Case in NICU

Therapy Thursday: Puzzles

Posted Thursday July 21, 2011 by Melissa

Puzzles have long been a favorite child activity, but I never understood...

Puzzles have long been a favorite child activity, but I never understood the magnitude of their educational value until now. As Case’s cognitive abilities continue to improve, I am on...

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Milestones

Posted Wednesday July 20, 2011 by Melissa

Milestones are things we hear about before our babies are ever born....

Milestones are things we hear about before our babies are ever born. There are pregnancy milestones that then become first year milestones, and second, and on and on. For many...

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IT dose 8

An MPS Cardiology Visit

Posted Wednesday June 22, 2011 by Melissa

Children with MPS often suffer from cardiac manifestations of the disease. The...

Children with MPS often suffer from cardiac manifestations of the disease. The GAG builds up in the heart itself and the valves, causing leakage or “regurgitation” and may enlarge the...

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Echocardiogram

MPS II Intrathecal Trial on Hold

Posted Wednesday June 15, 2011 by Melissa

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial...

UPDATE: As of 7/1/11, the suspension on enrollment in the intrathecal trial was lifted by the UNC Institutional Review Board. ———————————————– A clinical trial is never a place to get...

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Taking Time