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!
Dylin's party @ Golden Spoon to celebrate her good news! Thank you to all of our friends who came to support us and thank you to Golden Spoon for your donation!
