1 South Carolina General Assembly 2 120th Session, 2013-2014 3 4 H. 5212 5 6 STATUS INFORMATION 7 8 Concurrent Resolution 9 Sponsors: Rep. Bernstein 10 Document Path: l:\council\bills\rm\1584ahb14.docx 11 12 Introduced in the House on May 7, 2014 13 Introduced in the Senate on May 7, 2014 14 Adopted by the General Assembly on May 7, 2014 15 16 Summary: Family of Glenn and Cara O'Neill 17 18 19 HISTORY OF LEGISLATIVE ACTIONS 20 21 Date Body Action Description with journal page number 22 5/7/2014 House Introduced, adopted, sent to Senate ( House Journalpage 12) 23 5/7/2014 Senate Introduced, adopted, returned with concurrence ( Senate Journalpage 5) 24 25 26 VERSIONS OF THIS BILL 27 28 5/7/2014 29 1 2 3 4 5 6 7 8 9 A CONCURRENT RESOLUTION 10 11 TO COMMEND THE GLENN AND CARA O’NEILL FAMILY 12 OF RICHLAND COUNTY FOR THEIR COURAGE AND TO 13 WISH THEM THE RICHEST BLESSINGS OF GOD IN THE 14 DAYS AHEAD. 15 16 Whereas, in the face of unexpected and serious health challenges, 17 Richland County’s Glenn and Cara O’Neill and their children have 18 had their courage, determination, and endurance strongly tested. 19 Their response to these challenges has proven that all three 20 qualities are firmly grounded in the O’Neills; and 21 22 Whereas, as a result, they have been an inspiration to all who have 23 watched them go through their trials with grace; and 24 25 Whereas, in July 2013, little Eliza O’Neill, Glenn and Cara’s 26 daughter, was diagnosed with a rare terminal genetic disease called 27 Sanfilippo SyndromeType A. In one terrifying instant, these 28 parents were told they could expect to watch their child fade away 29 before their eyes; and 30 31 Whereas, Eliza and other children with Sanfilippo Syndrome are 32 missing an essential enzyme for normal cellular function. Over 33 time, a toxic material called heparan sulfate builds up in their 34 brains and bodies, leading to severe disability and death before 35 they reach their teens. The disease affects both genders, all races, 36 and all countries and continents; and 37 38 Whereas, at present, Eliza is a funloving fouryearold who likes to 39 sing, run, cuddle, play dressup, and romp with her big brother, 40 Beckham. She is, however, beginning to show signs of the disease 41 in her learning and attention, and if nothing changes, her condition 42 will continue to deteriorate; and

[5212] 2 1 2 Whereas, by age six, most children with Eliza’s disease have 3 irreversible brain damage and lose the ability to speak. As the 4 disease progresses, they also lose the ability to walk and eventually 5 can’t even feed themselves as seizures ravage their bodies. Every 6 moment counts as these children approach the tipping point when 7 their disease will take an irreversible turn for the worse; and 8 9 Whereas, the good news, however, is that there now is hope for 10 Eliza and the other victims of Sanfilippo Syndrome. In late 2014, a 11 genetherapy trial designed specifically for children with Sanfilippo 12 Syndrome is scheduled. This treatment would stop progression of 13 the disease overnight and save Eliza, as explained on the O’Neills’ 14 Web site, www.gofundme.com/ElizaONeill, for those who desire to 15 support the family and learn more about their story; and 16 17 Whereas, the South Carolina General Assembly rejoices with the 18 O’Neills that curative treatment for Eliza has been created and 19 pray that all needful resources for her participation will be in place 20 at the proper time. In addition, the members with one voice offer 21 their grateful thanks to God for the fine example of fortitude 22 demonstrated by this little daughter of South Carolina and her 23 family. Now, therefore, 24 25 Be it resolved by the House of Representatives, the Senate 26 concurring: 27 28 That the members of the South Carolina General Assembly, by this 29 resolution, commend the Glenn and Cara O’Neill family of 30 Richland County for their courage and wish them the richest 31 blessings of God in the days ahead. 32 33 Be it further resolved that a copy of this resolution be provided to 34 Glenn, Cara, Beckham, and Eliza O’Neill. 35 XX 36

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