Team Jonah's goal for 2010 is $25,000

        Our Jonah has always been curious and observant. He loves to hear the story about how minutes after they were born, Javan lay next to him with his eyes closed, trying to suck on Jonah’s shirt, while Jonah was quiet and still, looking with curious eyes at the world around him. As soon as he could talk, Jonah started asking us questions. Now, at five years old, his questions have become more elaborate: How does electricity work? What makes waves? How does a tornado begin? Recently, he innocently asked, "Will I go to heaven before you?" Immediately though, he chuckled and said, "Oh, no. You will go to heaven first because you were born before me!" A logical explanation…but one that makes our hearts stop for a moment. Because without a cure, it is very likely that our Jonah, our delightful, smart, precious, loving Jonah will go to heaven before us, simply because he was born with the devastating genetic disease Cystic Fibrosis.
        CF involves the buildup of thick, sticky mucus that clogs the lungs, causing serious respiratory damage, and obstructs the pancreas, leading to nutritional deficiencies. At this point there is no cure, and since CF only affects approximately 30,000 people in the United States, there is no government funding to find a cure. The only way CF will be cured, is if the Cystic Fibrosis Foundation funds it through donations and fundraising. There is incredible research in progress; in fact, there is currently a drug called Ataluren in stage three of clinical trials showing promise to cure the type of CF gene mutation Jonah was born with. If this drug is approved, the hope is that Jonah will take it as a pill three times a day, and it will correct the basic defect of CF, not only preventing lung damage, but doing so without breathing treatments and numerous medications. We are so excited and encouraged by this! But…until then, our daily battle to fight CF remains expensive, time consuming, and unrelenting. To keep CF from destroying his lungs, Jonah has to spend an hour a day wearing a tight compression vest and inhaling various nebulized medications. Every day he takes a prescription vitamin, acid blockers, a sinus spray, a high calorie supplemental drink, and about 35 enzyme capsules. And because CF inhibits proper digestion, he frequently gets tummy aches. He goes through all of this every day…battling CF does not allow for days off. He experiences far more x-rays, blood draws, throat cultures, poking and prodding by doctors, and even hospital procedures in a year, than most children will experience in their entire childhood. As Jonah’s parents, we have the constant job of ensuring that Jonah gets the best care possible, staying on top of prescription refills, and the never ending task of dealing with medical bills and insurance questions and discrepancies. And we have the emotional stress of worrying about Jonah’s health, his future, and how all of this will affect Javan. Daily, we must rely on the Lord’s strength and provision as we watch Jonah handle, with such graceful acceptance, all he must do just to stay healthy. He makes us so proud.
        When the CF Foundation was founded in 1955, children born with CF rarely lived to be five years old. Thanks to the research and care that the foundation supports, the median age of survival is now almost 37. But, as we’re sure you can understand, we want a future for Jonah that is much, much longer! We want a cure! Every year, the CF Foundation sponsors Great Strides walks throughout the country where people come together to raise money and public awareness of CF. The success of the walks is crucial to the foundation’s ability to fund life-saving research and support CF care centers. Since our first walk in 2006, Team Jonah has grown to over 100 walkers and has raised $102,000 for the CF Foundation! This year, on Saturday, June 12th, our team will be participating in the new Great Strides walk at Heartwell Park in Long Beach! We hope our team can raise another $25,000 this year.
        Please help us meet our goal and help find a cure for our precious son and the thousands of others who battle CF. We put this website together so that you can read more about Jonah, watch his video, and get updates on our team’s fundraising progress. To make a secure online donation, please click Donate Now. Or write a check payable to Cystic Fibrosis Foundation and mail it to us at "Team Jonah P.O. Box 4326 Lakewood, CA 90711." Please consider donating to help us cure CF! Any amount you can donate is greatly appreciated; all contributions are tax deductible and will be used to continue the CF Foundation’s vital research and care programs. We would also love to have you join our team and walk with us on June 12th; click Join Our Team. We can’t tell you how much it means to us to have so many people support our endeavor and join our fight!

Sincerely,

Rob, Marikka, Jonah and Javan Ostermann
Email Us
P.O. Box 4326
Lakewood, CA 90711