- Lucas and Juno
Lucas and his service dog Juno embody Courage every day. Lucas loves traveling and playing with his family. Juno just loves being with Lucas and her family. You can see more about Lucas and Juno at Lucas and Juno-the story of Lucas Hembree and his very special dog
- Emily Sawyer
Adorable Emily Sawyer is 4 now. She lives in Indiana, with her parents and younger brother Ryan. Emily was just diagnosed in January of 2011 with Sanfilippo Type A. Her family has newly joined the fight for treatments and a cure for Emily and her fellows.You can learn more about Emily at her Facebook pageSaving Emily
- Lucas Montgomery
Lucas Montgomery, 14, Iowa, MPS 3b
Lucas Montgomery is now 15. Lucas has been fed through a feeding tube since last year. He speaks only a few words now, but still loves life and his family. His quirky sense of humor always keeps his family on their toes.
Learn more about Lucas at Lucas' Story
- Jesse
- Jesse Taormino, 17, Baltimore, MPS 3a
Jesse just had his 17th birthday. He has lost many abilities, and is having great vision difficulties. Jesse lives in Baltimore with his loving family.
Learn more about Jesse at Jesse's life
- Emily O’Connor
Emily is a very upbeat 7 year old with Sanfilippo Type A. Emily lives on Long Island with her parents and two older sisters. Read more about Emily at Emily's story
You can also learn more about Emily by visiting her Facebook page at Emily's Dance-our baby's life with Sanfilippo Syndrome- Amelia
Lovely Amelia Rice lives in Tucson, Arizona, with her family. Amelia is laughing it up with a buddy. Amelia has Sanfilippo Type A. You can read more about Amelia on this site at Amelia Rice, Tucson. Be sure to visit Amelia's Facebook page Hope for Amelia .- Ciara and Hunter Bennett
Ciara and Hunter, the two children on the left, are brother and sister. Both have Sanfilippo Type A. Ciara is 16 and Hunter is now 14. They are at Kassi's (on the right) birthday party. Kassi also has Sanfilippo Type A. Ciara and Hunter go to many places and events with their loving parents, and enjoy getting out and seeing the sights.- Daniel Lopez
Handsome young Daniel Lopez is 6 and lives in Madrid, Spain, with his devoted parents. Daniel has Sanfilippo Type B.
You can read more (in Spanish) about Daniel, and about European efforts to find answers for this disease at StopSanfilippo.org
- Nina from Germany
Beautiful Nina, 19 years old, lives in Leverkusen, Germany, with her family. Nina has Sanfilippo Type A. At 19, she has already outlived many children who have Type A Sanfilippo. You can see a video of Nina at Nina, 19, Germany
- Jarod and Caleb
From teamjarod.org: Jarod and Caleb were recently diagnosed with MPS III, also called Sanfilippo Syndrome. Sanfilippo Syndrome is a very rare genetic disease. Although it explains all of the challenges and delays Jarod has struggled with through his life (Caleb isn't exhibiting as many symptoms yet), it also means that their futures are grim. Children with Sanfilippo Syndrome typically don't live beyond their teen years. These boys will slowly lose their ability to speak, walk, eat, survive.
- Quinn
Quinn, 5, Mississippi, MPS 3a
Quinn is now 5 years old and has Sanfilippo Type A. He is losing his speech, but loves life and his family. Quinn lives in Mississippi with his parents and big sister.
- Logan
Logan is one of three boys in the Pacl family, including his unaffected twin brother Austin, and his older brother Aidan. They live near Austin, Texas.
You can learn more about Logan's story and how the Pacl's worked to win $250,000 in research money for the fight for a cure at Logan's Story
Want to learn a little more about Sanfilippo syndrome? You can go to the About Sanfilippo Syndrome page. There are many pictures of beautiful Sanfilippo children at Faces of Sanfilippo Children. To see stories and videos, check the main menu under ‘stories and pictures’. Thank you for coming.
Sanfilippo syndrome is a set of progressive and cumulative effects caused by a buildup of a waste product called heparan sulfate in the cells of the body. The effects are especially profound to the nervous system, including the brain, and the joints. This cumulative effect can be caused by a mutation at one of four distinct gene locations. A mutation at the specific gene location results in the body’s inability to produce a single enzyme that breaks down sugars in the body. The missing enzyme is different for each of the four distinct types of Sanfilippo syndrome. These types are referred to as types A,B,C and D. Each of the four types of the syndrome is really a different disease, although the causes and effects are very similar. Type A is the most common in the United States and most parts of Europe. Type B is thought to be more common in certain population groups in European and Near Eastern countries (specifically Greece and Turkey, possibly Spain). The actual number of cases of the syndrome and relative frequency of the disease subtypes is poorly estimated, because of missed cases, misdiagnosis, unidentified cases, etc.
