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!!

Tuesday, March 22, 2011

Dylin's story & a reason to celebrate!!!


Dylin was born with Polycystic Kidney Disease. She has been the miracle child, unaffected by this horrible disease so far. But 2 years ago this month, Dylin became very ill. We thought it must have been from her kidneys, but it wasn't. We were now looking into what could be an entire new disease, in her blood! Dylin spent 3 months in and out of the hospital and saw countless doctors.  After numerous tests and 5 specialists that could not agree on her diagnosis.... I took matters in my own hands! It was midnight on a Friday night and I searched on UCLA's website for the pediatric hematology group.  As I looked over pages of doctors’ names, I prayed I'd know which one to email and hopefully grab their attention.  As any mother would, I chose the lead Chief of Staff for the Hematology group.  I wasn't playing around! I sent a brief email and attached Dylin's numerous lab & radiology reports. TEN hours later, we received a call from UCLA asking if we could be there Monday morning. They had never seen a PT/PTT (blood clotting ratio) count so high before in a child.   I thought my heart was going to stop. You never want to hear news like that from a world renowned medical center. Dylin and I flew there on Monday morning and after 12 vials of blood drawn, we had a meeting with 5 members from the hematology group, including the head doctor I emailed. Dylin was diagnosed in 24 hours. She has a lupus variable in her blood that makes it hard for her blood to clot. It affects her liver, which was the first sign we had that there was something wrong. As much as you don't want to hear Lupus or that she now has two incurable diseases, it was a relief to have answers. The good news that was presented, but not promised because Dylin was so young, was that UCLA had seen children grow out of it as their blood "got older." For the past two years, we've watched carefully of accidents and tested her blood every 3-6 months. Last week, Dylin saw the hematology group in Vegas to check her blood count. We've been told that if we didn't see the numbers lowering by the time she was around 6 and 7 years old, the disease would probably not go away. Last night, I received a quiet phone call from Dylin's doctor. When I heard a crackling voice on the other end, my heart sank. His voice was crackling because he was choked up with joy to tell me Dylin's numbers didn't just decrease but that they stabilized to where they should be; just like any other child!
We still have a long tough road ahead with Dylin's kidney disease but as for today, we are celebrating that our little Rock Star's battle for life has paid off!!
In honor of Dylin’s amazing news, our good friends at Golden Spoon would like to host a “Dylin Night.” A portion of all sales on THIS Thursday, March 24th, at the Eastern/Sienna Heights location will be donated to The Dylin Cenname Medical Fund. As of today our family has raised & donated over $125,000.00 in funds for research, to find a cure for PKD.
Dylin & her family will be at Golden Spoon from 5:30-8:30pm. You may also support her by purchasing frozen yogurt anytime during business hours and mention you are there for Dylin!
Thank you for your ongoing love & support!

Posted by at 10:18 PM
Labels:

1 comments:

  1. I'm choked up just reading this!!!!
    Thank you for the update! Go Dylin! I so hope that everything will turn out for the better. So far so good. Keep me in the loop my dear. As for Dylin, you are an amazing patient and I hope the best for you sweet heart. Your mommy is a very smart and driven mom to get you the cure you deserve.
    ~Felicia

    ReplyDelete

Subscribe to: Post Comments (Atom)