Jonah's Story
About ten million people in the United States, or about one in every 31, are carriers of the defective CF gene, but do not have the disease. In order for a person to have Cystic Fibrosis, both parents must be carriers of the defective CF gene. Rob and I were high school sweethearts, got married, began our life together, were thrilled to find out we were pregnant, and even more thrilled to find out we were having twins...all without having any idea we were both carriers of CF. It wasn't until a 16-week ultrasound of our twins that we had any idea that we may have anything but perfectly healthy children. At that ultrasound, a doctor spotted what is called “echogenic bowel” in Baby B's (Jonah's) intestines. We were told it was probably nothing, but that it could be a host of things, one of which was CF. Well, a blood test soon revealed that Marikka was a carrier of CF. A few weeks later, Rob's blood test came back with the results that he too, was a carrier. Suddenly we had the knowledge that we had a 25% chance of any of our children being born with this devastating, life-threatening disease. Coupled with the fact that Baby B had shown echogenic bowel, which is often a sign of CF, we couldn't help but feel afraid. Much of what we knew and read about CF was not very encouraging either. Life for people with CF has drastically improved in the last few decades, but is still far from “rosy.” In the midst of all of this, Marikka was put on bed rest for preterm labor. Needless to say, that was not an easy time of life.
We were blessed when Jonah and Javan were delivered at nearly 38 weeks on March 22nd, 2005! We didn't know yet for sure if either of our boys had CF, but we were thrilled that they were born full-term and with healthy, strong lungs. The boys were tested for CF the day after they were born, and we were told we would receive the test results in a few weeks. Those first few weeks of the boys' lives we were very encouraged by their seemingly good health. It was almost hard to believe it when our boys were three weeks old, and we found out Jonah did have CF. Over the next couple of weeks, Jonah's good health diminished. He started coughing a lot, grew very pale, dealt with a lot of reflux issues, and stopped gaining weight.
When Jonah was six weeks old, we took him to his first appointment at the CF Care Center at Miller Children's Hospital. By then, Rob and I were both worried about Jonah's health and were anxious to get him started on the necessary medications and treatments. We were not prepared however, when a chest x-ray showed that Jonah had a collapsed lope of his lung and the doctors said he needed to be hospitalized immediately. He spent three weeks in the hospital, which was a terrible time for our family. After those three weeks though, Jonah's health had dramatically increased and we went home with dozens of medications and more overwhelmed than you can imagine. Here we had two-month-old newborn twins, as well as a disease we had to battle each day.
The breathing treatments and medications soon became routine and are now just as much a part of Jonah's life as is eating and sleeping. None of it has been easy though...not for us, and certainly not for him. The daily battle against CF is expensive, time consuming, and unrelenting. It is not an easy fight, and unfortunately, it will only get worse as the disease destroys Jonah's body more and more over time.
We have been very blessed. Despite CF, Jonah has been extremely healthy. Jonah is curious, vibrant, and an absolutely delightful young man. It is often easy to forget that he has CF. He is healthy, but he is the healthiest he will ever be right now. The effects of CF will ravage his lungs over time and will ultimately lead to his death. Unless a cure is found. This is an exciting time-the CF foundation is currently funding research that won't just manage the symptoms of CF, but may cure it by reversing the basic defect. This type of research is incredibly expensive to fund though. And unfortunately, unless the CF Foundation raises the money to fund it, it won't happen. Because only 30,000 people in the United States have CF, it is not profitable for the pharmaceutical companies to invest their time and money into CF research; they simply won't make enough money. It is only through the CF Foundation's funding of the research that it will happen. And that is why Rob and I feel so strongly about being part of Great Strides and raising money for this vital life-saving research. We are so thankful for the many, many people who have helped us by making generous donations, supporting us as walkers, helping us fundraise, and keeping Jonah and our family in their prayers. None of this has been easy for us, and there are times that we get very discouraged and overwhelmed, but we try to simply focus on enjoying our delightful Jonah and doing all we can to help him.
Our Precious Boy
Once upon a time there lived a happy little boy, with eyes that sparkled and hair that flowed into curls. He loved to blow dandelions, collect rocks, and point out animals in books. He was a lucky little boy, with a Mommy and Daddy whose hearts burst with love every time they saw him. He was even lucky enough to have a twin brother-a built in best friend, a buddy for life. But in some ways, this little boy wasn't so lucky. You see, he was born with a disease that wanted to destroy his little body. In order to fight this disease, he had to do all sorts of things no little boy wants to do. He had to spend a half hour each morning, and a half hour each night, every single day, sitting still and breathing in medicine through a mask. Then he had to be pounded very hard on his back and chest. He had to take enzyme pills anytime he wanted to eat anything, and sometimes they didn't work right and made his tummy cramp and hurt. He had to get painful shots each month that scared him and made his leg ache. He had to have blood drawn to be tested, have cotton swabs stuck down his throat for cultures, and be strapped to a table for x-rays. He had to be poked and prodded by doctors and he often cried because he was scared of what they were going to do to him. His little body had a harder time growing and staying healthy than other kids'.
This disease was hard on his Mommy and Daddy too. At times, it was hard for them to keep up with the demanding treatments he needed. They cried when he cried. They worried every time he got sick or even coughed a little more than usual. They viewed playground equipment, books at the library, other children's hands, all with trepidation as they thought of the dangerous germs that might lurk there wanting to harm their little boy. They struggled to pay for doctors' visits and co pays on dozens of medications. They spent hours on the phone trying to get prescriptions refilled and insurance discrepancies squared away. And they worried about the future of their little boy and tried not to think about the fact that the median age of survival for people with this disease was only in the thirties, and that this disease would worsen and ravage their little boy over time.
You see...this little boy is our son Jonah, and his disease is Cystic Fibrosis. Will you join us in supporting our precious boy and help us raise money to fight this awful disease? Progress is being made and a cure is in sight, but we will achieve it only with the help of people like you. Please join our fight by supporting Team Jonah as we walk in Great Strides.
- Written by Marikka Ostermann (Jonah's mom) February 2007