[et_pb_section bb_built=”1″ _builder_version=”3.0.91″ custom_padding=”0px|0px|0px|0px” next_background_color=”#000000″][et_pb_row custom_padding=”0px|0px|0px|0px” _builder_version=”3.0.47″ background_size=”initial” background_position=”top_left” background_repeat=”repeat”][et_pb_column type=”4_4″][et_pb_image admin_label=”Top Image” _builder_version=”3.6″ show_in_lightbox=”off” url_new_window=”off” use_overlay=”off” always_center_on_mobile=”on” force_fullwidth=”off” show_bottom_space=”on” src=”http:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-content\/uploads\/2018\/06\/feature.jpg” \/][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=”1″ fullwidth=”off” specialty=”off” prev_background_color=”#000000″ next_background_color=”#000000″][et_pb_row][et_pb_column type=”4_4″][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=”1″ _builder_version=”3.0.92″ custom_padding=”2px|0px|37.9062px|0px” prev_background_color=”#000000″ next_background_color=”#000000″][et_pb_row custom_padding=”0px|0px|18.9531px|0px” custom_margin=”10px|||” _builder_version=”3.6″][et_pb_column type=”1_3″][et_pb_image admin_label=”Image 1″ show_in_lightbox=”on” show_bottom_space=”off” _builder_version=”3.6″ custom_margin=”||2px|” custom_padding=”|||” animation_style=”slide” box_shadow_style=”preset2″ box_shadow_horizontal=”4px” box_shadow_vertical=”4px” url_new_window=”off” use_overlay=”off” always_center_on_mobile=”on” force_fullwidth=”off” src=”http:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-content\/uploads\/2018\/06\/eliza.jpg” \/][et_pb_text admin_label=”Caption 1″ _builder_version=”3.6″ text_font=”|600|||||||” text_font_size=”12px” text_line_height=”1.4em” custom_margin=”8px|||2px” custom_padding=”|||”]<\/p>\n
Sanfilippo Syndrome patient Eliza O’Neill sits outside at her family’s home for the annual Sale to Save yard sale.<\/p>\n
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Eliza and her brother Beckham O’Neill spend time outside at the Sale to Save yard sale on Saturday. Beckham’s lemonade stand raised $74.<\/p>\n
[\/et_pb_text][et_pb_image admin_label=”Image 3″ _builder_version=”3.6″ src=”http:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-content\/uploads\/2018\/06\/20180616_102214.jpg” \/][et_pb_text admin_label=”Caption 3″ _builder_version=”3.6″]<\/p>\n
Glenn O’Neill, Eliza’s father and president of the Cure Sanfilippo Foundation, hosts trivia at the yard sale. Winners received yard sale credits worth $0.50.<\/p>\n
[\/et_pb_text][et_pb_image admin_label=”Image 4″ _builder_version=”3.6″ src=”http:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-content\/uploads\/2018\/06\/sanfilippo.jpg” \/][et_pb_text admin_label=”Caption 4″ _builder_version=”3.6″]<\/p>\n
Eliza’s brother Beckham O’Neill walks around the yard sale and sells lemonade to those who attend.<\/p>\n
[\/et_pb_text][\/et_pb_column][et_pb_column type=”2_3″][et_pb_text admin_label=”News Story” _builder_version=”3.6″ custom_margin=”0px||0px|”]<\/p>\n
Glenn and Cara O\u2019Neill always wanted a daughter and got one when Eliza was born eight years ago. When Eliza was 3, the O\u2019Neill\u2019s learned that their daughter had a neuro-degenerative disease called Sanfilippo Syndrome.<\/p>\n
\u201cYour child basically fades away before your eyes without a treatment,\u201d said Glenn O\u2019Neill.<\/p>\n
Sanfilippo Syndrome – often called \u201cchildhood Alzheimer\u2019s\u201d – causes children to lose skills they have already acquired, such as the ability to speak, feed themselves and use the toilet. There is no approved treatment, no cure, and those diagnosed with the disease typically do not live past their early teenage years.<\/p>\n
Glenn O’Neill is president of the Cure Sanfilippo Foundation. According to the foundation’s website, one out of every 70,000 children is born with the disease.<\/p>\n
The O\u2019Neill\u2019s are one of many families around the world who have had to adjust their lives to care for their terminally ill children, and they held a yard sale Saturday, June 16 called \u201cSale to Save\u201d to raise money for the Cure Sanfilippo Foundation. The foundation funds research to find a cure and treatments for Sanfilippo Syndrome patients.<\/p>\n
\u201cWe\u2019re out to fund research so that these kids can get into clinical trials and have a chance at life,\u201d said O\u2019Neill.<\/p>\n
Eliza is now 8 and a half years old. She lost her ability to speak shortly after she was diagnosed five years ago.<\/p>\n
\u201cWe know what the disease prognosis is for these kids, and it\u2019s very, very bad,\u201d O\u2019Neill said, \u201cIt\u2019s usualy death in the teens preceded by severe disability and intense suffering. \u201c<\/p>\n
Although Eliza is facing the rare, terminal disease, her parents do not feel alone and are quick to express their gratitude to everyone who helps and supports them in their fight to treat and cure Sanfilippo Syndrome.<\/p>\n
Glenn has said that watching his daughter suffer through the disease opened his eyes to the world and the things in life \u201cthat really matter,\u201d adding they try to stay positive and keep moving forward.<\/p>\n
The couple believes their efforts to fund research and clinical trials will make a difference and save the lives of other children born with the disease and hopes \u00a0parents of other children with Sanfilippo Syndrome can avoid the same ordeal.<\/p>\n
\u201cWhat parent wouldn\u2019t want their child to have the best quality of life for the longest possible life?\u201d said O\u2019Neill.<\/p>\n
The Sale to Save yard sale at the O’Neill’s home raised $1251.25. The Cure Sanfilippo Foundation has raised $5.5 million over the past four years, funded 17 research grants around the world, and helped start two clinical trials that are currently treating Sanfilippo Syndrome patients.<\/p>\n
To donate to the Cure Sanfilippo Foundation, visit\u00a0https:\/\/curesff.org<\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=”1″ fullwidth=”off” specialty=”off” prev_background_color=”#000000″][et_pb_row][et_pb_column type=”4_4″][et_pb_video _builder_version=”3.6″ src=”https:\/\/youtu.be\/g2_Y29aJvpo” \/][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"
The annual Sale to Save yard sale took place on Saturday, June 16. All of the proceeds go to the Sanfilippo Foundation. Their goal for this year is to raise $2 million. Find out how. <\/p>\n","protected":false},"author":87,"featured_media":10667,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"
Columbia family fights to cure rare disease<\/p>
Glenn and Cara O\u2019Neill always wanted a daughter and got one when Eliza was born eight years ago. WhenEliza was 3, the O\u2019Neill\u2019s learned that their daughter had a neuro-degenerative disease called Sanfilipp\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0o Syndrome.<\/p>
\u201cYour child basically fades away before your eyes without a treatment,\u201d said Glenn O\u2019Neill.<\/p>
Sanfilippo Syndrome - often called \u201cchildhood Alzheimer\u2019s\u201d - causes children to lose skills they have already acquired, such as the ability to speak, feed themselves and use the toilet. There is no approved treatment, no cure, and those diagnosed with the disease typically do not live past their early teenage years.<\/p>
According to the Sanfilippo Foundation, one out of every 70,000 children is born with the disease.<\/p>
The O\u2019Neill\u2019s are one of many families around the world who have had to adjust their lives to care for their terminally ill children, and they held a yard sale Saturday, June 16 called \u201cSale to Save\u201d to raise money for the Sanfilippo Foundation.The foundation funds research to find a cure and treatments for Sanfilippo Syndrome patients.<\/p>
\u201cWe\u2019re out to fund research so that these kids can get into clinical trials and have a chance at life,\u201d said O\u2019Neill.<\/p>
Eliza is now 8 and a half years old. She lost her ability to speak shortly after she was diagnosed five years ago.<\/p>
\u201cWe know what the disease prognosis is for these kids, and it\u2019s very, very bad,\u201d O\u2019Neill. \u201cIt\u2019s usualy death in the teens preceded by severe disability and intense suffering. \u201c<\/p>
Although Eliza is facing the rare, terminal disease, her parents do not feel alone and are quick to express their gratitude to everyone who helps and supports them in their fight to treat and cure Sanfilippo Syndrome.<\/p>
Glenn has said that watching his daughter suffer through the disease opened his eyes to the world and the things in life \u201cthat really matter,\u201d adding they try to stay positive and keep moving forward.<\/p>
The couple believes their efforts to fund research and clinical trials will make a difference and save the lives of other children born with the disease and hopes \u00a0parents of other children with Sanfilippo Syndrome can avoid the same ordeal.<\/p>
\u201cWhat parent wouldn\u2019t want their child to have the best quality of life for the longest possible life?\u201d said O\u2019Neill.<\/p>
To donate to the Sanfilippo Foundation, visit\u00a0https:\/\/curesff.org<\/p>","_et_gb_content_width":""},"categories":[68],"tags":[77,153,152],"_links":{"self":[{"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/posts\/10670"}],"collection":[{"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/users\/87"}],"replies":[{"embeddable":true,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/comments?post=10670"}],"version-history":[{"count":12,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/posts\/10670\/revisions"}],"predecessor-version":[{"id":10675,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/posts\/10670\/revisions\/10675"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/media\/10667"}],"wp:attachment":[{"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/media?parent=10670"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/categories?post=10670"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/carolinanewsandreporter.cic.sc.edu\/test\/wp-json\/wp\/v2\/tags?post=10670"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}