SAVE NICK'S VISION

Nothing new

2010-01-25T07:38:00.002-05:00

I have not posted in a while. Nick's eyes hurt all the time but there is nothing we can do but to put drops in them. So far the other eye has not burst open so we are just hanging in and living everyday. Always keep Nick in your prayers

Nick's weekend

2009-03-16T19:40:00.002-04:00

Just to let everyone know that we are hanging in there. We are in the process of looking for a doctor for the cornea transplant. Through the national Keratoconus forum I have linked up to other moms in the same situation. It seems that there are not too many of us around. I hope everyone saw the slideshows that I put together, please pass on. Even though Nick can not see well, his spirits are always happy, which helps us deal with the situation. I will try to update more now, that I have started facing the reality that this is what we are faced with. Nick has a new OCD thing that that is hitting his chest and yelling like he is tarzane. Well, that will be interesting the next time we are in church or at a moving when this happens. Within the next couple of weeks I will video so you all can experience it yourself, kinda scary.

The day after (Feb. 13)

2009-03-01T11:50:00.007-05:00

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.

2009-02-12-(sad news) CXL procedure

2009-02-14T02:03:00.008-05:00

On February 12, 2009, Nick went to the eyecenter@emory.edu. Dr. Stulting and staff applied for a compassionate waiver for the Collagen Cornea Cross-linking Emory Eye Center in September, since Nick did not qualify for the clinical trial. Nick needed anesthesia to have the procedure so it had to be performed in the Emory OR. That meant Kathie had to transfer the CXL equipment across town to the Emory OR. All of this was huge, I mean Hugh in the way of effort from writing the compassionate waiver, filling the insurance and then the procedure. Emory and ourselves went into this blind. Well, what I mean is that NO one knew how thick Nick's cornea was because Dr. Stulting and staff were not able to get a measurement until February 12, the day of the procedure. Because Nicholas has advanced Keratoconus, we knew his corneas was thin especially in the right eye. Remember in July, his right eye ruptured, which is an indication of the very thinned cornea. It was hoped that the left eye would be thick enough for the CXL procedure. "Sad to say It was not thick enough so Dr. Stulting could not do the CXL procedure. So our only option is a corneal transplant. If you watched our cast video, you will very much understand what we could be in for with a cornea transplant. With a corneal transplant you can not touch your eye for a whole year. The stitches stay in for a year. We know that this is something that we have got to look at but for right now, we are just trying to recover from the sad sad news from Thursday. I would like to take this time to thank Dr. Stulting, Paul, Kathie and Patsy for caring. The time,enery and effort you gave will always be remembered. If you have read this blog and wanted to give a thanks to these guys they can be reached at plarson@emory.edu , doyle.stutling@emoryhealthcare.org, I will need to get the other addresses. It is going to be a long road ahead, just keep Nick and us in your prayers If you register for the blog everytime I post you will receive an email notice....

January 28,2009 Good News

2009-01-28T17:26:00.003-05:00

OK, I have not posted in a while. On Dec. 12, 2008 we went back to Emory only to hear the good news. Emory Review Board had approved the compassionate waiver for Nick. Dr. Stulting's office said that they would call us as soon as they had the surgery scheduled. We got a call about three weeks ago from Dr. Stultings office and the surgery is for February 12, 2009. Just to let you know more detail to the compassion from Dr. Stulting. In the first place he like all the other doctors could have turned us away. We were willing to out of the country for a doctor to see Nick. Before Dr. Stutling excepted to process the waiver, he asked many of the doctors preforming the surgery if they would take Nick and NO one wanted to. This surgery is complicated in that patients are not put to sleep like Nick will be. Dr. Stultings office have to transfer all the surgery equipment across town to the Emory OR to preform the eye surgery. We do not know how much it will cost but how much is vision worth, Priceless..... As I write this, I am crying. Since Dec. 12, 2008 I have been putting off even thinking about this much less writing down the reality. I will try to post more often to keep everyone updated with this.

2008-10-28T18:03:00.002-04:00

On Friday, October 24, 2008, I had a Halloween party. Friends- Mandel's, Wayne, Phillip, Earl and Shirlee was in attendance. We decorated pumpkins, played boo bingo, bobbin for apples, pin the nose on the pumpkin, musical tombstone, pumpkin pinata, decorated a pumpkin, eat pizza and cake. I had fun at my party. I was a monster this year. A video will be coming soon

Nick had a seisure

2008-10-20T20:48:00.001-04:00

On Saturday, Oct 18 we got a call from Nick's caretaker(Rodney. Rodney,said that Nick just had a seizure. He fell to the floor and started shaking for about a minute. We took Nick to the ER and he had a CT scan which came out fine so on Nov 21, he will go to the Neurologist. I will keep you informed on this. But with Nick's eye, we are still waiting on the Emory Doctors when ever we hear anything I will let you know.

09/25/2008 HELP Stop Keratoconus disease

2008-09-25T23:10:00.004-04:00

I am on a mission to stop Keratoconus disease. This New procedure called CXL needs to be FDA approved so NO other person has to endure the pain of Advanced keratoconus, hydrops or Cornea Transplant(due to KC) ever again. While I am waiting on the approval for the compassionate exception from the Emory IRB, I decided to go forward with this mission. Please Email me if you are interested in helping to stop Keratoconus disease.

eye healing

2008-09-20T19:55:00.000-04:00

Nick's hydrop in his right eye has healed ( he no longer needs to wear the arm casts) but he is unable to see out of it because of the huge scarring. Nick will have a cornea transplant in his right eye and in the left eye have the CXL procdure. But this is the deal--Nick is unable to have his cornea thickness measured to know if the CXL can even be done. Dr. Stulting will still file for a compassionate exception with the Emory IRB & FDA. Keep in your prayers that Nick's cornea will be thick enough to have the CXL procedure. In 3 weeks we will get an update to where the IRB is. Within 4-12 weeks hopefully Nick will have all his eye procedures. I will post updates

September 18,2008

2008-09-18T19:06:00.004-04:00

I am really getting nervous about this whole thing. If you have read Nick's story and all the updates you should be caught up by now. Because Nicholas is Nicholas, the doctors have been unable to get his cornea thickness measured so therefore it is still questionable to whether or not he is a Candidate. With this CXL procedure, doctors do not sedate the patient so therefore, No doctor wanted to deal with Nicholas- NOT even the doctor in Europe. We are very grateful that Dr. Stulting and the Emory team want to be involved in our situation. Nicholas got the worst thing that ever happens to a cornea patient (Hydops). It was a crisis situation but now it is over and has left a scare on his right cornea. As of today the plan is: When the Institutional Review Board (IRB)of Emory approves the compassionate waiver then it is sent to the FDA. On July15 I wrote Senator Isakson to get in touch with the FDA about this situation and on July 19, David Bands from Washington FDA called me and said that it was not going to be a problem to get it through. Today, I got an update letter that you can read below. The plan is to put Nicholas under sedation and do a cornea transplant in the right eye and the CXL in the left eye. (It is said that if we do not get the cornea transplant in his right eye it will keep getting worse.) thanks for caring Nick's mom Janis: Our Amendment to get compassionate use is under "expedited review" as of 9/16/2008. I truly cannot speak to when we should have approval for that, as it's the IRB that moves this along, but it does appear that our original estimate of having IRB approval by late October still appears to be in the cards. It still remains possible that they would have questions before granting approval, and we will move quickly. BUT - Once that is approved, I am sure either myself or someone from the study will be in touch to schedule the next step. I remain happy to answer any questions you have, and I'll let you know if anything changes before our anticipated approval. Paul Larson Emory Eye Center

Sept 12, 2008

2008-09-12T19:35:00.000-04:00

Nick's sore on his arm is almost healed. We are still waiting to hear from Dr. Stulting on where the Emory IBR is. A cornea transplant is a very scary thing but that could be Nicks only option for his right hydrops eye and the long awaited CXL procedure.

Nick's Story

2008-09-10T23:45:00.007-04:00

Nicholas Richards, who has Down Syndrome, is 25 years old and live in Marietta, Ga. In 2007, Nick was diagnosed with advanced Keratoconus. On July 14, 2008, Nick's right eye developed hydrops . For weeks we struggled to keep Nick from rubbing his painful hydrops eye. The more he rubbed the more painful it became. Nick didn't understand the damage he was doing to his eye. All he knew was that it hurt and he needed to rub it. We tryed every thing we could think of from place his arms in cardboard tubs to splitting his arms with soccer shin guards. Then on August 3, we saw a lady in Home Depot with her arm in a half cast. That was it! our blessing had been answered. We needed her other half cast so Nick could not bend his arm to touch his eye. On Monday, August 4, Nick's dad called The Center For Orthopaedics & Sports Medicine office, in hopes they would hear our desperation cry. When, Master Caster, Paula Owens said, " come in Tuesday, at 7:45am", we knew that God heard our prayer. So on August 5, we minimized the further damage that Nick might have caused by having the half casts made for his arms. This video of Nick having his casts made was a Thank you Orthopaedic Doctor, Dr. Craig Weil and Mast Caster, Paula Owens for responding so quickly to our cry for help with their generous caring heart and technical knowledge. Normal care for a person whose eye has suffered a hydrop is a cornea transplant. We will update you, if this surgery is a possiblity. While Nick's left eye has not yet suffered a hydrop, the keratoconus(KC) disease is till progressing and thinning his cornea. A new, less invasive procedure called Corneal Cross-Linking(CXL) shows promise for treatment for keratoconus. It strengthens the cornea and halts the disease. The CXL is approved outside the US but only in clinical trials in the US. Because Nick's keratoconus is in the advanced stages and doctors have been unable to measure the thickness of his corneas, this CXL procedure for Nick will be determined in the near future. Dr. Doyle Stulting, at the Emory Eye Center in Atlanta, Georgia, is the lead investigator for the CXL clinical trial. In January,2008, Emory Eye Center was the first U.S. site to conduct keratoconus trials. Dr. Stulting and his medical team are pursuing a compassionate exemption, because Nick does not qualify for the trial, so he could possibly receive this treatment. This exemption statues will require time and resources. Keep Nick in your prayers and if you can donate to our local disability organization (Right In The Community) in dedication of Nicholas Richards. We will post any updates.

Hydrops

2008-09-03T20:51:00.006-04:00

A rare extremely painful complication of Keratoconus. It's a split within the internal layers of the cornea. Fluid enters the cornea within the eye. The cornea becomes acutely swollen & opaque. As the split heals over weeks or months, scarring occures. A corneal transplant could be the only treatment for improved vision. Nick's eye looked worse than the above hydrop eye because he was rubbing it.

Advanced keratoconus

2008-09-02T20:30:00.001-04:00

Keratoconus is a progressive eye condition causing the cornea to weaken, thin & bulge. This condition may cause reduced vision, nearsightedness, and astigatism. Up until now, the tratitional treatment for improved vision was a corneal transplant.

sept 1,2008 update

2008-09-01T19:37:00.000-04:00

Nicholas had a good weekend but is still saying that his right eye hurts. He is not wearing his casts at this time because he is not touching his right eye. Because Nick would twist his cast on his right arm, he developed an infection on his arm. It should clear up soon. Even though his birthday was Aug. 25, we are celebrating his 26th birthday on Sept.3.

Slideshows

2008-08-24T23:56:00.008-04:00

Nick's casts getting made 8/5/08

2008-08-01T20:20:00.002-04:00