“God bless moms for their God given intuition for it was my mom, whom, when my baby was around one, first noticed something was not “normal” with his left eye. She told me that if I observed him closely that I would notice his left eye involuntarily wander, or, that he might have a condition that we know as lazy eye. I’m not quite sure if it was my state of denial at the time, but it took me quite some time before I actually saw it happen with my own eyes.

My name is Paola and very similar to the other stories that I have read here, I am privileged to share with you, our story, my son’s story, Christian’s story.
It was not until after months of waiting to see the retinal specialist in Phoenix Children’s Hospital, and after more tests and more waiting that the true diagnosis was rendered. The retinal specialist submitted the test results to the ophthalmologist and it was he who delivered the news that my precious son had Coats disease. After we thought that we were finally over the stress of Christian’s difficult delivery having been born with the umbilical cord wrapped around his neck that we were then faced with the challenges and uncertainties of this condition that no-one, not even the doctors seemed to know much about.
We were told that nothing could be done for him, given that he was still too young to express any discomfort or symptoms; that we would have to wait until he was at least four years old and or until he had the ability to express himself; that until then, all that we could hope for was esthetic surgery to correct his lazy eye and that even this would not be permanent.
Today my son Christian is 9 years old, a healthy, happy, fun loving and intelligent boy whom participates in the APEX program for gifted children at his school because he is above his academic level; yes who would have thought that he is all of these things in spite of the fact that when he was only one year and six months old he was misdiagnosed with cancerous growths in his left eye by his pediatrician who stated that these would eventually spread to his right eye and then to his brain as well.
Yes, the doctor’s prognosis for my son at that time was that of no hope for his future. But I believe that with the sharing of knowledge, the support of foundations such as the Jack McGovern Coats Disease Foundation and the creation of awareness via forums like Facebook that we will all see hope in our children’s futures.”

Follow Jaxon’s “kNOw Coats” page on Facebook! Click here.  

“When our son Jaxon was diagnosed on December 30, 2011, he was 2 years.  He was too young to tell us that anything was wrong and never skipped a beat to show us that he was losing vision in his Coats’ eye.  When initially diagnosed, the ophthalmologist performed a CT, ultrasound and a MRI to rule out Retinoblastoma.  Since Jaxon was only 2, he had to be put under anesthesia each time a test was done.  Jaxon was under anesthesia during an ultrasound and the doctor came out to tell us that he didn’t see calcium, but wanted to do a MRI to rule out Retinoblastoma.  He thought it was something called Coats’ Disease.  Since Jaxon’s case was in the later stages we were still possibly talking eye removal.  He also said that if we went back and looked at pictures we would probably notice a glow in the affected eye.  I will never forget this gut wrenching feeling I had that if I would have known about the glow that we could have saved some of Jaxon’s eyesight and even possibly his eye.  We felt so helpless and it was a parent’s worst nightmare.

For the next several sleepless nights, we were up researching about Coats’ Disease.  Family’s living with Coats’ Disease know that there is not a lot of information out there for this disease.  We came across the Jack McGovern Coats Disease Foundation and thought WOW what an inspiration!  They actually help host annual conferences that doctors from all across the United States come to and talk about Coats Disease.  We asked ourselves how can we help JMCDF?  My husband is a musician and said to me that he wanted to put on a music/concert event to raise money.

On October 20, 2012, we held Jaxon’s Fight: “kNOw Coats”.  It featured pumpkin decorating, a hayride, face painting, bounce houses, corn hole, and 2 live bands.  Our main goal was to not only raise awareness in our community so other parents can catch Coats’ Disease in the earlier stages, but to also show Jaxon what an inspiration he is to us.  We are pleased to report that we were able to donate $6,500 to the JMCDF.  We were even fortunate enough to have press coverage.  Take a look at the below article:

October 19, 2012:

http://progress-index.com/news/jaxon-s-fight-fundraiser-to-help-find-cure-for-rare-eye-disease-1.1390478

To-date our little hero is 3 years old.  He is so smart, witty, outgoing, lovable, and is the best big brother.  We remain hopeful that he will remain pain free until one day we can find a cure.  I invite all of the family’s out there that are dealing with Coats’ Disease to help raise awareness in your communities and to help the JMCDF with their research to help find a cure.  What a better gift can we give our children than a cure!”

I’m a quiet, shy person by nature, but after reading other people’s amazing stories, I thought I would get out of my comfort zone and share my story. Most of the people around me do not know my story, unless they were close enough to go through everything with me. I tried to make this story as short as possible, but it’s just a long story that spans over 10 years.

At age 17, while a senior in high school the vision in my left eye was gone in an instant. It wasn’t black, but completely blurry, like looking through an old shower door. No pain, no other symptoms. I had always had perfect vision and never had any medical problems, besides a lot of headaches. After going to see several different “specialists,” and only being told a blood vessel ruptured and as a result the eye filled with blood, which I could not see through causing my loss of vision. I was told that the blood would eventually reabsorb and my vision should return. And very slowly the blood went away and my vision came back, but never back to my clear 20/15 vision. Every few months, this would continue to happen, my vision would be gone and then slowly come back always leaving me with slightly worse vision than the last time. I of course, bumped into things and people a lot, especially the first year, before I learned to walk on the left side of people when possible or give myself more room to make up for the lack of depth perception.

Finally, at age 19, I found a wonderful retinal specialist in my hometown. At the time he was the only retinal specialist in Northern California. He is still my most favorite doctor. He was warm, compassionate and never treated me like just another patient or an interesting puzzle to figure out. This doctor had a few theories for the diagnosis, and we did lots of different tests but he couldn’t make a conclusive diagnosis without surgery, which wasn’t necessary at the time. About six months into my regular visits with this specialist, I suddenly had zero vision. Everything went black. I called the doctor and he had me come in right away to confirm what he thought had happened, a retinal detachment. This changed everything. I was willing to deal with blurry vision, but from the first retinal detachment, my sick eye would now consume most of my life. The pain was horrible. It’s hard to describe pain coming from your eye when it’s not a common part of the boy to feel pain in. I had surgery to reattach the retina and fix as much as they could.

This first surgery confirmed the Coats diagnosis. At the time in 1997, it wasn’t easy to research. From what I found, it was very rare, usually in young male children and usually only one eye was affected. I had several retinal detachments, one right after the other. I was beginning to feel like a permanent patient, with no hope of normal activity. Finally, I had almost a year without a detachment. My doctor said it was possible to go years without another detachment and it could suddenly go dormant, giving me a little hope. My doctor referred to me an optometrist to see my vision could be improved. If I had a stable eye, I even had hope of surgically implanting a corrective lens. This did not work out for me. Using a contact lens with the strongest possible prescription, only gave me 20/200 vision and unfortunately that made it clear that my retina was badly damaged and I had double vision, which I had not been able to notice until the vision was improved. So, we tried glasses with prisms to fix the double vision, which was not successful either. My vision could not be corrected and unfortunately, I continued to have retinal detachments. I even had a retinal detachment happen within days of the previous surgery. It was almost routine for me to have my vision go black in my left eye, head to the doctor’s office and schedule yet another surgery. After all the surgeries and having my lens removed from damage, my vision at it’s best was just light and dark. It was very sensitive to light, tearing and closing at the smallest amount of light. My eye was always sick and hurting with pressure in the 50s on a good day. The migraines triggered by my sick eye became almost a daily struggle and nothing I tried helped. After so many years of trying to keep the eye stable, I was running out of options. In June of 2005, I was forced to stop working. I could no longer function at my job as a legal secretary in a law firm. I had tried every type of eye drop, most not covered by insurance and very expensive. I tried having the medication administered through a needle directly into my eye, but that didn’t help either.

One day my son walked into my room with a band-aid across his eye and said his eye hurt too. It was both heartbreaking and sweet. He was so young, but already he felt my pain and wanted to make me feel like I wasn’t the only one going through this.

My last option was to have the eye removed. I had protested as long as I could. I knew I would most likely not have my eye much longer, as it was only getting worse deteriorating quickly. I had my eye removed on February 2, 2006. I tried to prepare myself for being 28 years old and actually only having one eye. Everyone said it would be better. The only orbital eye surgeon was at California Pacific Medical Center. She was a very nice lady and we went over everything in great detail. My surgery did not go as well as I had hoped. When I woke up from surgery, I was in the worst pain I had ever felt and at this point my pain tolerance was very high. They finally sent me home that evening. The pain worsened and the bleeding increased. Two days after my surgery I tried to go back and see my surgeon only to find out she had left the practice and now lived in Texas! It felt like a cruel joke or trick. My primary care physical was able to figure out that another orbital surgeon was in the area but he did not take my insurance, but after talking with him, he agreed to see me. This doctor is my least favorite doctor, ever. Cold, distant and not a glimpse of human emotion is ever displayed. He said my eye socket was horribly infected and he needed to remove the implant, which is basically a hard round plastic object taking up the space where my eye had been so that once everything was healed, the prosthetic shell would fit better and look more natural. I was in the hospital for 5 days. Three days on antibiotics, which were administered through a PICC line, because the antibiotics are so strong they cause normal veins to collapse, prior to the surgery.

This time, after waking up, my pain was normal, for just having another surgery. The eye socket healed and about four months after I had my prosthetic eye. Honestly, I hated it. I hated seeing myself, I hated when people looked at me. The pain in my eye socket continued, but slowly it got better. I continue to have horrible migraines a few times a month. I also continue to get infections in the eye socket. It’s almost like pink eye, it’s very painful, feels like sand grains are in my eye and green puss oozes out constantly. If it gets really bad, my eyelids swell shut. I had to have two more surgeries on my infected eye socket a few years ago doing a tissue graph to replace the tissue that was damaged. This started the healing process over and I had to go without my prosthetic eye for a few months until I could have another one made to fit the changed dimensions of my eye socket. I definitely did not think after having the enucleation I would ever need another surgery.

February 2, 2013, was my seven-year anniversary of the enucleation surgery and I finally feet at peace with my lost eye. I still struggle with the monocular vision, but I had years to adjust to my loss of vision, which probably helped. Having had binocular vision, it’s hard to deal with balance, spatial awareness, using stairs or worse, escalators. When you have no depth perception it affects almost everything you do. Since I had my driving license prior to my vision loss, I was forced to get my doctor’s approval to drive and then re-take and pass the behind the wheel test, to prove my vision impairment did not prevent me from driving safely.

“I had my son Chace on April 1, 2012. He just turned 10 months and around 3 months of age I knew something was wrong with his left eye. I took him to an ophthalmologist who told me he had retinoschisis, but he was not a retina specialist and immediately referred me to one. I took my son to the retina specialist who told me he had toxoplasmosis. I didn’t believe that so I took him to another specialist that confirmed his diagnosis. My son’s pediatrician then referred us to the infectious disease department at a children’s hospital. They ran the test for toxoplasmosis, it came back negative. They ran it again and came back negative again. Yet they were still determined that toxoplasmosis was the cause. They did a CT scan of his brain to check for calcification and a lumbar puncture to test spinal fluid for the parasite, while he was under anesthesia for these tests they did an eye exam which showed bleeding in his retina.

So after all these showed no signs of toxoplasmosis they started testing him for every virus, bacteria, and parasite that can cause eye problems. In total, about 30 diseases/infections were tested for. Everything was negative and the doctors wanted to start him on medicine to treat toxoplasmosis, of course I said no because every test showed that he did not have it. Also, the concoction of medicines used to treat toxoplasmosis is very toxic, and would have destroyed his young fragile immune system. I went as far to email a toxoplasmosis expert in Chicago, and she had to call my doctors (after she looked at his results) and told them he does not have it.

They finally listened and referred us to the best retina specialist in my state. This specialist did an eye exam and said he too thought it looked like toxoplasmosis. At this point I was sick of hearing this diagnosis. I asked him why everyone is saying he has this parasite? He told me that clinically speaking the lesion in his eye looked like a toxoplasmosis scar. Well he decided to do an eye exam under anesthesia with fluorescence. 2 weeks later when the exam was done we finally got the Coats disease diagnosis. The lesion that every doctor thought was a scar were cholesterol deposits.

He is in the very early stages of the disease, stage 2a. It is only located in the periphery and in October he had his first round of laser treatments. He was put under anesthesia in January of this year and the doctor could see no new bleeding, so he did not need any more laser treatment at that time. He will go back in May for another eye exam.”

“On 11/11/11, we took our son, Samuel {Sammie} to the eye Dr. for a wandering eye.  I had prepared myself that we were going to leave with a patch.  Not having a clue what was coming.  We took all 3 boys with us and ended up being there almost 2 hours.  We left uneasy.  With one of two things.  Either Sam had Coats Disease or Retinoblastoma cancer.  Talk about a heavy heart.  We couldn’t get into see the specialist until the next week {5 days} who then told us he would need to do a more thorough exam under anesthesia and Sam would need an MRI to rule out the cancer.  This all took place the day after Thanksgiving.  So much to be thankful for that year.

After the exam and MRI, we were told it was NOT cancer, but he had stage 3a of Coats Disease.  He said it was pretty advanced and since it was such a rare disease, he had never treated it before, and only seen a very mild case of it.  Unfortunately there is not a specialist in our area.  So we were referred to Dr. Polly Quiram in Minneapolis Minnesota {a short 4 hours from home}.  Sam had his first surgery on 12/12/11.  Dr. Quiram told us his retina was 75% detached and there was quite a bit of leakage in his eye.  He had cryo done on some of his leaking vessels, and got avastin to hopefully help stop the growth of new blood vessels.  She wanted to see him again in 4 weeks.  4 short weeks.   So we traveled in a blizzard to Minneapolis with our 3 boys for Sam to have his second surgery.

That was a year ago.  Sam was just barely 3 years old.  Today he is four.  He has had 7 surgeries in the past year.  But I think we are on the up and up!  He hates having surgery.  The bad part about it now, is that he knows what to expect.  He knows that he is going to get the mask to put him to sleep, he knows {and HATES} that he is going to have to get multiple sets of eye drops.  His last surgery was on January 21st.  Just 10 days after the birth of our baby girl.  We weren’t able to make it to his surgery in December due to a massive snow storm.  So we had to reschedule.  Timing was bad from the holidays, to my pregnancy.  I knew if we rescheduled, we risked Sammie’s eye worsening, and I wouldn’t be able to travel in the winter time with a week old baby.  It killed me to not be there.  My husband said Sam did the best he ever had.  He didn’t cry when he woke up from anesthesia and we got the best news ever!!  Dr. Quiram said Sam’s eye has never looked better!!  No new leakage and she didn’t want to see him again fro 4 months!  That’s the longest we have ever gone!   We are so happy to finally feel like we are winning against this awful disease.

We still aren’t sure what Sam can really see.  He says sometimes he can see and other times he can’t.  I guess since he’s only four and probably doesn’t know any different it’s just normal to him.  He is such a brave little boy and we love him so much!”

Running a 50 mile race is mind blowing to a lot of people.  But, to do it in South Carolina is crazy to most.  I live in North Carolina so I have been training in the head and preparing for hot and humid with little wind, and good thing I trained in those conditions because that is exactly what it was.

As I got to the starting line, along with 40 other people, I knew it was time to run my race.  When you train and train and get to a race, it is hard to remember to run your race.  What I mean by this is run the race how you trained.  I had trained to run for 6 minutes then walk for 1 minute, a 6:1 the whole race.  I started out not running my own race, I ran the first 1 hour without a break just chatting with another racer.  I had a great conversation but after the first hour I had to drop him.

I got to the turn around, mile 12.5 and was feeling great, my legs were holding up and my body was ready to push itself to the max.  The next turn was at mile 25, the half way point.  I was expecting to get there in around 4-4.5 hours.  I looked at my watch coming in and saw 3 hours and 50 minutes, fast, maybe too fast but I was feeling good.  I changed shoes, put on more sunscreen, as the day was getting longer it kept on getting hotter and hotter and the sun was brutal.  I stretched my legs and then out I went, to finish the last 25 miles.

Around mile 27 I started feeling a sharp pain between two of my ribs on my left side.  The only thing I could think of was that this is where my heart was.  I am only 29 years old but have heard of young athletes having heart attacks so I started walking and checking vital signs to see what was going on.  Working as an Ocean Rescue for 5 years allowed me to do this on my own without having to call someone.  As I was walking all I could think of was the US runner who was 27 who had a heart attack and died during a race.  Sounds bad, but your mind goes to random places during long runs.

My crew was waiting for me at mile 28 and they knew something was up, I was walking for more than one minute.  My fiance came up to me and asked what was wrong, and I told her I had a sharp pain in my chest where my heart was.  My dad offered to walk with me for the next mile or so and it was a great bonding experience.  My crew consisted of my dad, stepmom and my fiance, Holly.  As my dad and I walked I was quiet, didn’t want to talk, which is not me.  He had seen me at my worst during other races and knew this was not a good sign.  I started running again with him and the pain started again.  It was not hurting unless I was running.

Running hurt, like no pain I had felt before, and I was scared.  My heart is pretty important and I didn’t want to hurt anything.  Holly ended up riding the bike next to me until mile 31 where there was an aid station.  When we got there she asked me how much I had gone to the bathroom during the race.  I hadn’t thought about that, I had not gone yet.  I had drank 1 full water bottler every 2 miles for 4 and a half hours and had not gone pee, which leads me to thinking dehydration was playing a part in the pain.

Sitting under a tent in the middle of nowhere South Carolina I had to make one of the hardest decisions I have ever had to make, do I walk the last 19 miles and hope that my pain goes away and run when I can, or do I take the DNF (Did Not Finish) and play it save.  With a wedding coming up in October and our future I played the cards safe and took the DNF.  It is something that I was not happy with at the time but it was a blessing.

Everything happens for a reason.  This race was not the race for me to get my 50 mile race in.  It is not the end of the world, there will be other times in life to try this distance.  This is something that goes along with Coats Disease, which in the process of training and running this race I raised $850, everything happens for a reason.  You might not know what the reason is but it happened and how you take the news or the race the minute after makes the person who you will be.  This is something that I have learned through the years, yes bad things happen but it is up to you to turn that around and make something good out of it.  It can happen and you can do it, just keep pushing through.

Read more about Chris and be inspired here: http://specialtybrandsonline.com/nowenergybar/athletes/chrisbarnes/2012/07/23/50-mile-turns-into-a-50k/

create & buy custom products at Zazzle