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Michele Karl's Personal Page
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Why I Walk....
Most of you coming to this page know why I walk. The obvious... for my three peas. In case you don't know Max and Gabe have ARPKD - Autosomal Recessive Polycystic Kidney Disease. This is a genetic disease that affects their kidneys and will ultimately lead to the need for a kidney transplant. That is the simple answer of what ARPKD is. It is actually a lot more complicated than that and includes cysts in their kidneys, high blood pressure, scarring on the liver (CHF), an enlarged spleen, poor growth, medication every day for the rest of their lives, many trips to the doctor with many tests being run, the need for extra water and concern for dehydration....... and on and on. This is a life long chronic illness that Max and Gabe have. But they are doing fairly status quo at this time with a few minor blips on the radar. Max seems to be extremely mild at this point with only high blood pressure and the hope is he will be an adult before needing a kidney transplant. Gabe is also good but not as mild as Max. He isn't growing as well as we would like and we are currently fighting with our insurance company to get him growth hormone. We are also having a hard time controlling his blood pressure and he is currently seeing a urologist, gastroenterologist, and endocrinologist for all of his other symptoms! The thought is he will be an adolescent when he needs a transplant.
They both have good kidney function though and slightly enlarged spleens. They are also both adorable and a lot of fun. Max is now 11, just finished up fifth grade and on his way to middle school, and just came home from sleep away camp for the third time and loved it. He is growing up and is such a sweet mature boy. He loves to play soccer, loves to read, and has a ton of friends. Gabe is now 5 and has his own little personality. He is also a very sweet boy and loves his older brothers! He loves to play with trains and look at books and is on his way to Kindergarten!!!! And not to leave Nate out even though he's my "healthy" one.... he's 8 and is really one of a kind!! He also loves soccer, playing with our puppy, and loves nature.
I am still the co-coordinator of the National ARPKD Chapter and feel fortunate to help other mothers like me. I have made life long friends and have learned how to be of support to many other families with children with ARPKD and to families who have had babies die from this disease. There are no treatments and no cure for ARPKD and roughly 30% of babies born with ARPKD die at birth. That is why the Walk for PKD is so important to ARPKD. To raise money for much needed research and also to raise awareness of this relatively unknown and very rare disease.
Thank for you visiting my walk page. Thank you for listening to my story. Thank you for learning more about ARPKD. And hopefully thank you for your donation - no matter how big or small any amount of money will go towards research, which I so appreciate.
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Honor Roll
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