We’d like you to get to know some of the children around the world who have Sanfilippo syndrome. Sanfilippo children come from all races and places, and include both boys and girls about equally. Some have siblings who also have the disorder, while others have only unaffected siblings. We’d like you to spend some time here, learning the stories of the families who deal with this disorder.
Every child with this disease experiences significant disability in their lifetime. Few survive beyond their teens or early twenties. Despite that, these children and their families live life bravely, meeting each day for what it brings them. There is no doubt it brings pain and sorrow, but there is also great joy and inspiration in these children, their courage, and their families’ courage.
Hunter Bennett, Sanfilippo Type A, now 13
So here are some of their stories, mostly as told by a parent.
Purple Stands for Courage: Caroline in Fort Lauderdale is hosting a Purple Lemonade Stand for their friend Blair (who has Sanfilippo syndrome), during the Rio Vista Golf Cart Brigade this Saturday, February 11 from 3-6pm at the Rio Vista Park. They will be selling purple lemonade and baked goods all in a purple theme. Continue reading →
Our special friends Lucas Hembree and Juno just hit the big time once again. Here they were yesterday on the front page of the Today show and msnbc website. The wonderful photo of Lucas and Juno has become the signature poster for Sanfilippo syndrome, and maybe for all MPS diseases. Continue reading →
Care and share this story! Help your Facebook friends learn more about Sanfilippo syndrome. [fbshare] Handsome Pol lives in Terrassa, Spain, with his family. Pol has Sanfilippo Type C. His mother, Belen, is a founder of Sanfilippo Barcelona. That organization is very active in encouraging and supporting research and awareness of Sanfilippo syndrome. Since Pol … Continue reading →
Brooklyn, 3, and Jayden Boyce, 5, are the children of Stefanie and Justin Boyce. Both were diagnosed with Sanfilippo Syndrome in October, 2009. Stefanie and Justin have dedicated themselves to not only giving their own children the best life possible, but to telling their story and raising funds to build a completely handicap accessible home. … Continue reading →
We continue highlighting pages and sites dedicated to children and families dealing with Sanfilippo syndrome. Today we highlight two families: the Mulders of Hudsonville, Michigan (Jarod and Caleb), and the Montgomerys of Cedar Rapids, Iowa (Lucas). Be sure to go to their linked sites and read about these brave kids and their equally courageous families. Continue reading →
…and lots of packages too! If you are one of the generous people who have sent Lucas Hembree, Juno and their family Christmas mail, they want you to know how much they thank you for your thoughtful generosity. Be sure to visit Lucas’ Facebook page at Praying for Lucas to see many more pictures of … Continue reading →
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 →
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 →
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 →
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 →
A gallery of the beautiful faces of Sanfilippo children. The order is alphabetical by first name, where I knew the child’s first name. Continue reading →
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 →
We’d like you to get to know some of the children around the world who have Sanfilippo syndrome. Sanfilippo children come from all races and places, and include both boys and girls about equally. Some have siblings who also have the disorder, while others have only unaffected siblings. We’d like you to spend some time here, learning the stories of the families who deal with this disorder.
