5/8/14

Help Save Eliza and Find a Cure for Sanfilippo Syndrome


By on 5/08/2014 10:58:00 AM

photo credit:  https://www.facebook.com/ElizaOStory/photos_stream
Life is so precious—and we often forget just how quickly our lives can change.  When I watch my daughters playing, laughing, dancing, sleeping—even fussing and fighting as sisters do—I try to focus on each and every moment.  I was recently contacted by Glenn O'Neill, a father who wanted to share his family’s story as they face daughter Eliza’s diagnosis with a terminal illness called Sanfilippo Syndrome.  While there is currently no cure for 4-year old, Eliza O’Neill’s illness—her family holds onto the hope that a pending clinical trial could provide a successful treatment.  Unfortunately—that clinical trial lacks the funding needed to proceed.  The O’Neill’s became fundraisers to bring both awareness and support to the need for funding of this clinical trial.  It could be the cure that little Eliza needs.

What is Sanfilippo Syndrome.  Sanfilippo Syndrome is a genetic disorder that results when patients are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death often before they reach their teens.   This disease affects males and females of all races throughout the world.  Families watch perfectly healthy children painfully decline in health and function over time and the disorder is terminal.


Sanfilippo Syndrome has no cure—but, researchers are hopeful—they just need the funds to proceed with their work.  One of the most devastating factors of rare illnesses is that there are generally not large foundations lending funding and support to research and clinical trials.  In fact, many of us have probably never heard of Sanfilippo Syndrome.  When the O’Neill’s daughter, Eliza, was diagnosed last year—the outlook was not good.  There was no cure for the illness—but, there was a clinical trial set for later this year to test a possible treatment option.  The problem is that this trial still needs funding to proceed—nearly 2.5 million dollars to get it off the ground.

The O’Neill family has reached out for support.  Rather than sitting by helplessly—the O’Neill’s have hit the internet to both create awareness of the illness and to garner support for this clinical trial.  Their online efforts have already raised over $800,000 towards their funding goal - but they still have a very long way to go.

What can you do to help?

Please watch and please share www.savingeliza.com . 

Donations are accepted directly on the site—and supporting this family’s donation effort supports efforts to save not only Eliza—but, to help the other family’s facing this devastating illness throughout the world.

You can follow all latest updates on Eliza at her facebook page at: www.facebook.com/ElizaOStory

Follow on Twitter at @SavingEliza #savingeliza

Thank you for taking the time to read about Eliza and her family.  

About Angela

Angela is a freelance writer and blogger, blessed with 3 daughters, 4 cats, 1 needy dog, and 1 very supportive husband.

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