My name is Christina I am the mother of a set of twin boys Parker and Lucas. They was born September 18th 2012. About a year after they were born we started noticing some differences between Parker and Lucas. Parker was a little behind Lucas on his learning abilities and motor skills. We had a check up one day and his doctor was concerned about how large his head was and about his development. We
had to take him to a genetic specialist and have some tests done. Almost a month later we got a called and was asked to go into their office. When we got their they had told us that Parker has a rare genetic condition called Sanfilippo Syndrome. This is a rare disorder that 1 out of 70,000 children are born with. Eventually Parker will lose the ability to walk, to talk, or do anything for himself. Most kids with this do not make it through their teenage years. It is the worst kind of news that any parent can hear is when you find out that your child will have such a short life and have to go through all of this. Shortly after we got this news we found a genetics specialist in Chapel Hill, NC that is getting ready to start a test study for a drug that may help kids with this syndrome. We had to go to Chapel Hill a few times to have more tests done to see if Parker can get into the study. They had very few spots open for it. It's such a sad feeling when you see other parents at the hospital with the same situation, fighting for that spot that you are and knowing that someone is not going to get treatment. We found out that the cut off age is 4, so if Parker did not make it into this there would be no other chances. Two days after all the testing we got a call telling us that Parker made it into the study! The doctors do not know what will come out of it, it may help slow the process down, or it may stop it completely. My husband and I have such strong faith that God is with him and that this treatment will work. Right now we go every three months for more tests and starting in March 2016 is when the treatment will start. We will have to go every month we just don't know if it will be once or twice a month. They have to do a randomized drawling to see which kids will treatment once or twice. The reason that I am setting this page up to hopefully get some help to pay for our trips back and fourth to Chapel Hill. I am a stay at home mother and my husband works full time. When we go on our trips to Chapel Hill we have no income coming in, and we get behind on everything. So I started a fundraiser if you can help that would be amazing if not please share. I want to thank you all for reading our story and I will keep updates on Parker. http://www.gofundme.com/rzhua8
