Thank you soo much Devon. My name is Melissa I am 20 years old and have ARPKD was diagnosed when my mom was 5 months pregnant with me. The doctors told my mom I wouldnt make it past 5 and here I am. Its an ongoing battle but right now I am winning this one as well. It is scary sometimes but Im living a good life going to college, engaged and making the best of life. It i a very rare disease but with strength and faith you can live a great and healthy life. RIP to all those we have lost to PKD <3
Thank you! This is an amazing video! You are such a brave young woman! Our first baby passed away from ARPKD. Our second baby, Mitchell was diagnosed with the same ARPKD. He had experimental (15 years ago) amnioinfusions in utero. Which saved him! He had dialysis until he was10 months old. Then he recieved my kidney when he was 10 month old. At Lucile Packard Children's Hospital. He is 15 years old, and in stage 3 kindey failure. He will get his father's kidney next. He is a happy young man.
Wonderful, Devon. I have a 3 month old grandaughter who was just diagnosed with what looks like a milder case of ARPKD and it's great to see how good life is for you!
Thank you soo much Devon. My name is Melissa I am 20 years old and have ARPKD was diagnosed when my mom was 5 months pregnant with me. The doctors told my mom I wouldnt make it past 5 and here I am. Its an ongoing battle but right now I am winning this one as well. It is scary sometimes but Im living a good life going to college, engaged and making the best of life. It i a very rare disease but with strength and faith you can live a great and healthy life. RIP to all those we have lost to PKD <3
xoxKiSsEzxox89 1 month ago
Thank you! This is an amazing video! You are such a brave young woman! Our first baby passed away from ARPKD. Our second baby, Mitchell was diagnosed with the same ARPKD. He had experimental (15 years ago) amnioinfusions in utero. Which saved him! He had dialysis until he was10 months old. Then he recieved my kidney when he was 10 month old. At Lucile Packard Children's Hospital. He is 15 years old, and in stage 3 kindey failure. He will get his father's kidney next. He is a happy young man.
iyeoh1 4 months ago
Thanks so much for posting this. I have two children with this disease at age 7 and 9. You are such an inspiration and blessing.
peggc6 9 months ago
Wonderful, Devon. I have a 3 month old grandaughter who was just diagnosed with what looks like a milder case of ARPKD and it's great to see how good life is for you!
michael3060scofield 9 months ago