Welcome!

Thank you for visiting our site, dedicated to cure our daughter Dylin from Polycystic Kidney Disesase.

Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. In fact, PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, down syndrome and sickle cell anemia COMBINED!

Polycystic means mulitple cysts. In effect, PKD denotes muliple cysts on each kidney. These cysts grow and mulitply over time, also causing the mass of the kidney to increase. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment.

PKD comes in two forms. Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common, affecting 1-in-400 to 1-in-500 adults. Autosomal Recessive Polycystic Kidney Disease (ARPKD) is far less common, affecting 1-in-10,000 at a far younger age, including newborns, infacts and children.

When you look at our child from the outside, you'd never guess in a million years that anything is wrong. She is beautiful, active and has a personality like no other. But on the inside, the disease is progressivley getting worse. She is a MIRACLE CHILD. We know God has a special plan for her. She has beaten all odds since she was born. We were told to be prepared of a still-born, then that changed to "maybe she'll live for a month," "okay maybe a year".... she has now puzzled so many Doctors, they just sit back and watch how wonderful this medical mystery child is doing.

Too many children & their families are suffering from this disease and we can not be naive to think we will never have "our day."

There is no treatment or cure of this disease, please help us CURE OUR DYLIN!!

Thursday, January 13, 2011

Announcing Dylin's own BE KIND shirts!



We are excited to announce Dylin's very own Be Kind Shirts.
If you aren't familiar with the Be Kind shirts and what they're all about, I strongly urge you to check out http://www.joshstevensfoundation.com/

One month before Josh’s 13th birthday, he lost his life in tragic accident. His time on Earth was much too short, but his kind heart and spirit will live forever. Josh was known for his unique brand of kindness. His legacy continues to inspire. The Josh Stevens Foundation was created to honor his life and the example he set for us all to follow.

The Josh Stevens Foundation and Dylin's Foundation have joined together to bring awareness to the Be Kind campaign and Polycystic Kidney Disease. Profits from shirt sales will be shared between the two foundations.

When thinking of a slogan for Dylin's shirts, I explained to her what we were doing and asked her what she wanted it to say. (on the front of the shirts they all say Be Kind, and the back's have different sayings on them).Without a moments hesitation Dylin said, "What about, Rock On! Because I Rock On after all my blood tests and other testing." I had chills through my body, and knew this was perfect!!!
She also told me down to the detail of what she wanted her logo to look like. With Dylin's requests, this is what I sketched. The entire project was exciting for the both of us and we are happy to share this with you!

This logo and Josh's logo are both on the back of the shirts as well!
 
Posted by at 7:48 PM
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1 comments:

  1. Hi my name is Felicia.
    I have been following your blog(s) since Nov 09.
    I have recently been diagnosed with PKD the dominate form. ( I didn't know I had it until the day before my daughter was born) This disease is a possible reason for why I had Preeclampsia back in November forcing me to have a premature baby only weighing 1 lbs 4 oz! My daughter TanaLee at the tender age of five months was also found to have cystic kidneys. It is unconfirmed if she too carried PKD due to her death in June 2010. She struggled with many things, I'm sure if she really did have PKD like me then it didn't help her struggle with life. Your posts give me hope and courage to continue with life. I hope to have another baby in the near future but my fears are great and my risks are high because of PKD. I hope you don't mind my visit to your blog from time to time and you can always follow me @ tanaleedavis.blogspot.com or email me with any advice about pregnancy and this disease- it would be much appreciated.
    Email: pinkpokadotz90@yahoo.com
    ~Felicia

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