By Haxhere “Jeri” Çela
from the Cystic Fibrosis website
Welcome to Jeri’s GREAT STRIDES Home Page!
Hello everyone and thank you so much for visiting my website today. It was really difficult for me to write this year’s letter. Even though 2008 was extremely stressful, it turned out to be a miraculous year for Nik and I.
At the age of 5 months old, Nik was diagnosed with Cystic Fibrosis. Over the last couple of years, Nik’s health has been deteriorating faster then what we expected. He was hospitalized a couple of times and had a couple of procedures because his left lung was constantly giving us issues. Saturday, the day before last year’s walk, we had to rush Nik to the emergency room because of pain on his right side. This hit me so hard that I felt like I was starting all over again with being told that he had Cystic Fibrosis. IT WAS HIS GOOD LUNG and our only hope – how could this happen? Yet, the next day both Nik and I went to participate in the walk. Monday, we found out that Nik’s left lung was damaging his right lung. The doctor informed me that our backs were against the wall and the only thing left to do was to remove his left lung. The procedure had not been done in New York on a child with CF in years and it was very complicated. I didn’t know what to do or what to think. I was beyond myself and I didn’t know how to deal with it. I was told that it would be and is one of the most painful procedures. I felt I had nowhere to turn, and felt really bad that I did not know more people. I did not have the money for the best doctors and even worse, I had to tell my son what was happening, especially since he understood and knew that his right lung was his life support.
Before we scheduled the surgery, a guardian angel stepped in and helped me get to speak with the best CF specialists in the US. After speaking with the specialists, I had a better sense of what options were available for Nik and this relieved me in ways I can never explain. I knew all that was being done for Nik, was all they could do so we decided to go forward with the procedure at Children’s Hospital of New York. I was informed that if I didn’t go forward, his health was only going to get worse. My loving son, my little angel, and the strongest person that I have ever met became my Idol. The day of the procedure he was stronger than my entire family/friends put together. Nik went into the surgery with a smile; I left his side heart broken. Sitting in the waiting room until his procedure was completed was the longest day of my life. After 6 hours, the doctor came out and said it was a success; however I had to understand that Nik was going to be in so much pain. When I went to go see Nik and saw the state he was in, I didn’t believe that I was mentally or physically strong enough to deal with it. It was hard for Nik to breathe and he no longer had an appetite so he lost a lot of weight. The tube that is supposed to help with the drainage got clogged with mucus and stopped working. Nik had a double lung collapse because of pneumothorax and was rushed back into surgery to add an additional tube. Now he had two tubes sticking out of his chest and was in double the pain. By the end of the day, the second tube got blocked as well and all the doctors told me that we just had to wait and see what happens and there was not much more they could do for Nik. During that week in ICU, we heard of two different children that passed away. We heard the screaming from their families and the devastation. There are absolutely no words that can explain what was going through my head. All I kept thinking was that my pride and joy, laying in the bed might not make it. Nik continued to fight for his life without complaining about the pain. Three days later we were moved out of ICU. A couple of days later, the tubes were removed and we were able to go home. MY life changed! My son got another chance at life and it was a better life than his life before the surgery. I got additional years to spend with him! He was able to be a normal boy, Nik was able to run, play, and enjoy his childhood without that constant cough.
It has been four months now and Nik is still going as strong as ever. There are many things that I learned, however there are two that will stick with me forever. The first and most important is that there is absolutely nothing more important than the health of your children. The second thing is how far the medical field has come and I don’t know where I would be without the Research and Medicines that helped save his life. I knew that the fundraising was important, and it helped so much, but this time it saved my son’s life. All the new antibiotics and new procedures have given Nik a second chance at life. Now, Nik is at the point in his life that he is using all the new medicines that are available as well as trying some experimental drugs. My worst fear is that Nik will grow immune to them. So what is most important is that the medicine that is still in research, get approved!! This is where I am asking everyone for help. I am told that the only thing that stops this is the lack of funds. Please help me take down that barrier.
There will be a walk on May 31st at Midland Beach in Staten Island. I know I am starting early, however we have become the Chair Family (SO EXCITING). This means, my goal is much higher, so again, I am asking for each and everyone to help me meet the goal by making a donation, but also to join us, spread the word and help us raise awareness as well as money for this horrible disease.
Cystic Fibrosis is a genetic disease that targets multi-organ systems such as the pancreas and lungs and affects 30,000 Americans. Those with CF produce thick and sticky mucus, which deposits in the lungs and if not properly cleared, can lead to serious infections. In addition, people with CF have mal-absorption problems with digesting food properly and have to take dozens of pills each day to help their body absorb food.
GREAT STRIDES is the Cystic Fibrosis Foundation’s largest and most successful national fund-raising event. Please help me meet my fund-raising goal of $25,000.00 by sponsoring me. Your generous gift will be used efficiently and effectively, as more than $.90 out of every dollar you contribute will be used to fund the vital programs of the CF Foundation.
To learn more about CF and the CF Foundation, visit www.cff.org/great_strides/jericela
Making a donation is easy and secure! Just click the “Click to Donate” button on this page to go to make a donation that will be credited to my team, “Team NIK”. Any amount you can donate is greatly appreciated!