I am starting this petition on behalf of my son Zaidyn Reed. On November 18th, 2011 Zaidyn was diagnosed with Pulmonary Vein Stenosis. From that moment the lives of his family and especially him has been forever changed.

Pulmonary vein stenosis is a rare and serious condition in which there is an obstruction (blockage) in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins simultaneously.

The stenosis occurs due to an abnormal thickening and, thus, narrowing of the walls of the veins. Pulmonary vein stenosis frequently progresses. As a result, partial loss or even total obstruction of flow to a vessel or vessels may occur.

Surgery to widen the narrowed veins and catheterization to stretch the vessel are usually short-term solutions since the obstruction typically recurs within a month to six weeks.

He was diagnosed at Johns Hopkins in Baltimore, Maryland. When we were initially told about the disease it seemed as if we had options. Soon after we were floored to find out that there were not many options and the chances of him surviving this horrifying, aggressive disease were not likely. It was the hardest news we had heard in our entire lives. Zaidyn had just turned 5 months old, 5 months before this news I was told I had given birth to a perfectly healthy, blue eyed baby boy.

We had never heard about Pulmonary Vein Stenosis, we knew nothing about the disease or the slim chances of him surviving it. I remember getting on Google, typing it in and the very first thing that came up was Children’s Hospital Boston and a program/study that they had for kids with this disease.

I found a group of parents whose children were in the study and had great information. I knew right then that Zaidyn needed the chance that these children had because whatever they were on seemed to stabilize the disease.

As soon as Zaidyn was diagnosed with his disease we immediately started talking to Children’s Hospital Boston. Through talking to them I was informed that to be enrolled in the study Priority Partners would have to approve it. I honestly thought that if this is something that could potentially save my sons life or any kids life that insurance would be on board. I was devastated to find out that they denied my son to even have a chance at life. As soon as we were told Zaidyn had PVS, Johns Hopkins said their only goal was to get him well enough to make him comfortable to take him home and let him die, not an option!

Then we had an option of open heart surgery to try and open up the veins, seemed as if there may be a chance but a decision had to be made right then and there, this was his only chance to make it past the point he was at. We agreed and before I knew it my beautiful little boy was laying on this hospital bed, barely the size of a pillow going to the operating room. My heart was beating so fast, I couldn’t breathe, I didn’t understand what I had done so wrong while I was pregnant to make my poor little boy go through something that I, myself was so afraid of. He was so strong though, he held through and came out from surgery a new little boy. Soon after recovery in the ICU he was smiling, eating, playing and even trying to sit up on his own. December 7th was an amazing day when I got the news he was good enough to go home. I was so afraid to take him home because I had grown so used to watching monitors all day and seeing numbers telling me my little baby was okay. But I was so relieved my baby was going to make it to his first Christmas, at home and with his family.

December 19th he had his very first follow up appointment with Dr. Coulson, his cardiologist at Johns Hopkins. I was so excited when they hooked up the pulse ox and turned it on and it read 100. I was in tears, the first time I had ever seen a perfect heart rate and his pulse ox at a perfect 100. They did his electrocardiogram and that was also great. Then it was time for his echocardiogram, I was so nervous, it took forever to call his name. Finally, we went back to have it done and the results were that there was no change; it still looked the same from when he went home. Life was great at that point, I really thought that the surgery was it, it was the only thing he needed and he was better and nothing was coming back.

He celebrated his first Christmas with Mommy having all eyes on him because he was acting different that day, throwing up, breathing faster than normal. Christmas was exciting to celebrate at home with him though. I was so scared to even admit to myself that something was going on, telling myself it was a cold, or he had eaten too much. His home health nurse had been there to visit several times and I was even trying to convince her that he was acting this was for random different reasons. We received a pulse ox for spot checks because I was getting nervous. I was constantly checking it. That was when I realized something was happening day to day. His heart rate was steadily going up, his pulse ox was dropping into the 80’s, something was happening. I called early one morning when he was still sleeping when I noticed his heart rate was above 170bpm. I got an appointment with Dr. Everett that Friday January 6th. They did his pulse ox, it was in the low 90’s and they did his electrocardiogram which seemed fine. Dr. Everett came in and said everything was okay from what he could see and I convinced him to do an echocardiogram because in my heart I knew something inside was no longer “okay”. Sure enough, it was back. It had only been a little over 2 weeks, how could it be so bad so quickly? Something snapped inside me when I was told that, I knew he had no other options but to be seen in Boston for his best fighting chance.

Zaidyn only has 2 options left at this point to survive; be enrolled in the study or a heart/lung transplant. From what I have read and researched, lung transplants are extremely expensive, have a high mortality rate and would require him to be on anti rejection medications for the the rest of his life along with any other medications for any problems a lung transplant may cause. Not to mention the fact that the wait time for a lung transplant is very long and if he does not have some sort of treatment for the PVS now, then he would never even make it long enough to have a lung transplant option.

By enrolling Zaidyn into the study and putting him on Gleevec and Avastin, he actually has a chance to be considered stable which makes him stronger and possibly cures him. After finding out the PVS was back at his last echocardiogram, I packed up and headed to Boston with the intentions of getting my son the greatest care. He has since had many tests done only to find out that things are actually worse than we originally thought. Zaidyn had a catheterization while at the hospital in Boston which has helped right now but they say within six weeks the stenosis can reoccur. During the catheterization we found that he lost the 2 veins. Children’s Hospital Boston is now willing to pay for his Gleevec which saves a great deal of money in the long run. We need help with the Avastin and the testing every few weeks, which are mostly tests he would need to have done anyway because of the PVS so I just don’t see where it is too much to ask. I have been told that Priority Partners does not want to pay for anything because it is a study. These medications are making this disease stable in so many children!

Zaidyn is the strongest and most amazing person I know. At only 7 months old even with everything that he has been through, he is so full of life and so happy. His smile makes every single day so worth it and makes the biggest problems seem so tiny. Zaidyn smiles about everything and his laugh is enough to melt your heart. Looking at him from the outside you have no idea that he is literally dying inside. I have a 4 ½ year old as well and even though Zaidyn is so young they have such a special bond, the way they act is as if they completely understand each other without even saying a word. Zaidyn is the light of our entire family, the way he acts, the way he reads people. He is a miracle. He definitely came as a surprise and ever since has been the best thing that has ever happened to us. He is incredibly strong and has already been through so much and he is still fighting, he deserves a chance, the very best chance. When I was told there was absolutely no cure for this disease, I was lost. How does something like this happen to MY baby? Now we have a great chance to make this disease stop in its tracks as it has with other children and because of insurance coverage and “guidelines” , our family is just supposed to sit back and watch as my son who still has so much life left to live, is left to slowly get so sick that he dies? It just doesn’t seem at all fair in any way that because I am not wealthy and cannot afford the all of the healthcare he needs, that he doesn’t deserve his only chance to live.

The trial makes so much sense. Everything they are doing is amazing. The Avastin is an FDA approved drug that helps with the stops the growth of cells, the testing is something necessary whether he is on the drugs or not. I am begging you to reconsider your decision to deny my son something his life depends on. It would be so devastating to know that there may be a treatment out there to save Zaidyn’s life but because of the money, I am unable to get it for him.

Do you have children? How would you feel if you were in my shoes? If this was your son or daughter and because of something so simple, you couldn’t get the care he or she needed to save their life? It is even more unfair that someone is controlling whether my son lives or dies right now. It is so hard to feel the pain of not knowing where else to turn or what else I can possibly do to help him get through this and live a happy life as a child like he deserves. Other than this horrible disease, he has no other health problems. He eats perfect, he gains weight, he is playful and active. There is no reason his life should be cut short because of something like this.

By Zaidyn getting these two medications and the testing, it could very well slow the progression of the disease thus prolonging the time between surgical or cardiac catheterizations. Pulmonary Vein Stenosis is an extremely rare and very rapid progressing disease; this is his last chance to be with us for many years. We have already waited too long to get him these medications and he has lost 2 of his veins, and could possibly lose a third vein very soon. He is here for a reason; please consider being his grace. -- Kristyn Ditzler