Gallery

An update on Lucas Hembree and Juno

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Abeerah, Khansa and Zahra Beg, MPS 3B

This gallery contains 44 photos.

Well, I though I was getting better. Everything was going fine today. This evening while out, Juno started alerting that something wasn’t right. It gives Daddy cold chills when Juno does this because we know something is going to happen. About and hour and a half later I started projectile vomiting and couldn’t stop. By the time mommy and daddy got me to the hospital I went into a seizure and my oxygen levels started going way down. So it looks like another night at Children’s Hospital for me. Keep me in your prayers that they can find out what is causing these recent problems. Continue reading →

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Fondation Sanfilippo

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Laura HIgonnet, of France, has Sanfilippo Type C

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Here is a wonderful new video about lovely Charlotte, made available by the Swiss foundation for Sanfilippo research Fondation Sanfilippo Charlotte has Sanfilippo syndrome and is now 7 years old. She was 4 years old when the video was made. If you don’t already know about them, please familiarize yourself with this wonderful organization. We … Continue reading →

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Portraits — MPS children

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Welcome to a gallery of portraits of some kids who have MPS disease. There are a fair number of holiday pictures in the gallery. Some of the children with featured portraits are Lucas Hembree, Chloe Key and Miles Young. Lucas is 4 and lives in East Tennessee. Miles is 6 and lives in Cushing, Oklahoma. … Continue reading →

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Evan Abel, 10, Waco, Texas

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Evan, 10, MPS3B

This gallery contains 1 photo.

Meet Evan. He’s 10, lives in Waco, Texas, with his family, and has Sanfilippo syndrome Type B, also called MPS III, Type B. He’s an active boy, still climbs up to slide down the slide and plays on the playground. But he speaks very little, and according to his mother, Kristi, his mental abilities are … Continue reading →

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EURORDIS

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LOGO-EURORDIS

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EURORDIS is a non-governmental patient-driven alliance of European patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life for rare disease patients. Much of the current development and testing for MPS disease therapies seems to be centered in Europe. This seems particularly true considering the current climate … Continue reading →

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It’s back to school time!

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Adam ready for 6th grade

This gallery contains 18 photos.

Here are some great images of MPS kids and their siblings going back to school. It takes courage for many kids to face the great unknown that first day–and it takes extra-special courage for MPS kids to do it. That doesn’t even mention the faith it takes for their parents to do it — sometimes … Continue reading →

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On Elisa Linton from the Minden, Ca. Times

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elisa linton 2

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In a cottage nestled along the shoreline of Minden Hills’s Big Bob Lake, Elisa Linton sits in a large, screened-in room. She’s eating dry Cheerios from a tray affixed to her wheelchair and drinking juice from a plastic cup with a spout. Occasionally she bangs the cup on the tray. The original story at this … Continue reading →

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Ethan gets a new ride

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Want to know more about the people and places in this story? We’ve just gotten to ‘know’ (in the internet sense) some great new people from Ireland who are getting it done for sick children in Ireland. Liam Mulcahy and family, along with the Cycle 4 Sick Children group in Ireland are a great group … Continue reading →

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Ethan,9, of Galway, Republic of Ireland

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galway

This gallery contains 13 photos.

Want to know more about the people and places in this story? About Ethan Ethan Smythe lives in Galway with his family. He was diagnosed at nearly six years old with Hunter syndrome (MPS II). Meet Ethan and learn about his journey, and about his mom’s struggles to get a diagnosis in our portrait. Ethan … Continue reading →

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Mia, 18, Ohio, and Breno

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Okay I'm shaking now where the heck is my cheese

This gallery contains 20 photos.

About Mia Mia Pruett is now 18 years old. She lives in Ohio with her parents, in quarters near Wright-Patterson AFB. Mia has Sanfilippo syndrome Type C. Mia still functions well, and walks and talks fairly well. Her mental level is approximately 5 years. Mia lost her service dog and friend, Emily, in 2009. It … Continue reading →

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Brandon Patterson, 15, Madison, Alabama

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Brandon Patterson, 15, Type A Sanfilippo

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Meet a Very Special Madison Teenager Updated: Monday, 08 Aug 2011, 4:02 PM CDT Note:  Brandon Patterson is 15 and has Sanfilippo syndrome Type A. This is Brandon’s story. Many thanks to Brandon’s family and to Fox 54 for sharing the story. It’s a rare genetic disorder that affects 1 in 70,000 children. It’s called Sanfilippo Syndrome. … Continue reading →