About a year ago, four year old Eliza O’Neill, of Ohio got serious genetic disease problems. It was a rare degenerative disease called Sanfilippo Syndrome-Type A.
The revelation came very slowly when the school teacher noticed that Eliza was unable cope with other kids of same age group. She would lag behind in playing, recognizing and responding and was not up to the mark. The parents once informed were fast to pursue, many tests were carried out and finally zeroing on to the exact finding.
Mother of Eliza, Dr. Cara could recollect the turmoil they had to go through. Eliza’s body was unable to break down the carbohydrates. They learned that the problems would multiply in the near future, say in about four to six months when she would start to lose control over speech, balance to walk and cause a slow death creeping in. The blood vessels get damaged.
Dr. Cara O’Neill and husband Glenn were too shocked to find that the disease was non-curable. However, they did not give up and were able to find Dr. Haiyan Fu, of the Center for Gene Therapy at Nationwide Children’s Hospital. Fu had success in treating mice to recover from this disease, but the research had to go on to the human trials. To start,they required funds to the tune of $ 2.5 million.They were able to get help from a videographer and launched a web site “saving Eliza.com”. This website went viral on launching. The money started pouring in and were able to gather one million up to June 24th.
O’Neills appeared in TV shows and felt sure that the clinical research can start to benefit other kids as well, and they can think in terms of seeing the light at the end of the tunnel. For more on how to help Eliza, go to www.gofundme.com/ElizaONeill
The link below will take you to closer to happenings.