Sunday, March 1, 2009

The day after (Feb. 13)

It has been really hard for me since, Nick's procedure did not work. We are in the process of investigation cornea transplants for both eyes. We want to know what the latest is, need to find the right doctor, when and where, and the main thing is to what life will be like after the surgery for Nick and our family. Because of Nick's OCD and what we went through with his hydrops, the mere thought of a life time of not touching his eye is very depressing. I put together this slideshow so you could better see and feel to where we have been and where we are going- Nick's journey with Keratoconus The next day, Feb. 13, I heard from a lady in Ohio, who's son has a similar situation. Carson is only 12 years old with Down syndrome and had a hydrops in one eye and needs the same procedure that Nick was going to get in the other eye. We have gotten together and decided to make it our mission to educate the public on what is Keratoconus and the new procedure Collagen Cross-Linking(CXL). We have put together another website and blog thumbsup4cxl.blogspot.com. I have put together a slide show called Stop Keratoconus with CXL Stop Keratoconus Connie is president of the Down syndrome Cincinnati, Ohio group. 35 states this past week meet in Washington so the past two weeks I was busy putting together material for her. Not only are we educating public but our politicians on CXL and the need to rework the FDA system. CXL has been very successful overseas for the past 10 years but because of the legal/regulatory barriers has not been in the US. If I can help 12 year old Carson or another person receive this CXL gift, I will do what I can. I will be posting soon more information but in the meantime, just pray that his left eye does not rupture into a painful hydrops and we can find the information we need to move on with Nick's eyes. I would like to thank all that donated to his situation. Because the Eye Center gave us back the check, we provided Chick-fil-A for Dr. Stulting and 12 of the Emory Eye staff and three basket of goodies for 3 main staffers. Rodney(Nick's friend and caretaker) and Nick made a trip to Hilton Head with the rest of the left over money$. Thank you Rob Reichel (brother-in-law) for making this trip possible. If you would still like to donate for Nick's situation please go here:Donate here. Please put in dedication on behalf of Nick Richards, The Richards' family thanks you for your donation and prayers.