Wednesday, May 4, 2011

Great Event!

Yesterday afternoon we had the honor of joining the Delaware champion child at the Elkton, MD Walmart to celebrate the Children's Miracle Network MD hospital, the Johns Hopkins Children's Center. We had a great time meeting the staff of Walmart, enjoyed pizza and cake! And a big surprise for Clayton - a $500 gift card to Walmart! What a great company!!! This particular Walmart raised $22,000 in 2010 and this year they even have a bigger goal. They have huge hearts and care about sick children, we are so thankful for them!

Wednesday, April 27, 2011

CMN is awesome!

What an honor to be selected as the Maryland representative for Children's Miracle Network! Clayton is an amazing kid - you'd never know by looking at him that he has a life threatening medical condition. He loves football, karate, baseball, swimming, cub scouts and playing with his little brother Graham.

Back in May of 2005 Clayton started with a fever that never got better. After several week of being shuffled back and forth from the pediatricians office, he got sicker and sicker. His fevers were around the clock, and very high. His health was deteriorating and we couldn't understand what was going on - why wasn't our little boy getting better? He was finally sent to a local Baltimore hospital on June 1, 2005. He was there for two weeks, they confirmed a bad lung infection that was spreading but didn't know what it was or why it wasn't getting better. An ambulance picked us up and took us to Johns Hopkins Children's Center, a special hospital in the Children's Miracle Network.

We had a diagnosis within the first 48 hours at JHCC. Clayton is one of 250,000 people that have Chronic Granulomatous disease. We found out that his body doesn't fight certain mold and bacteria like a normal immune system does. This was a life threatening situation and we were against the clock to get this out of control infection stabilized. Dr. Lederman was our hero - he diagnosed Clayton almost immediately and helped with the other teams of doctors to treat Clayton. He had very, very hard to treat bacterial infection and his lungs were in terrible shape. After two surgeries, uncomfortable and painful procedures, and many tests, Clayton was victorious! It was nothing short of a miracle - a collaboration of teams and teams of people helped make Clayton better.

We are going on almost 6 years of infection free health for Clayton. He is on medication 2x/day and injections 3x/week. He is maintained at JHCC and they watch him like a hawk! We couldn't be more grateful to this hospital who saved our son - and keeps him healthy.

Tuesday, April 26, 2011

Children's Miracle Network Hospitals Champions

Champions is a Children's Miracle Network Hospitals program that brings attention to the important work being done at its 170 children’s hospitals. It does this by honoring 51 remarkable kids who have faced severe medical challenges, and helping them tell their stories.

The Champions program designates a child in every state who has bravely battled a serious injury or illness. The Champions represent the nearly 17 million children treated at Children’s Miracle Network Hospitals every year. The 2011 Champions have dealt with a wide variety of injuries and illnesses including genetic diseases, organ transplants and traumas, as well as various types of cancer.

The Champions travel for a week in October, first to Washington, D.C., where they traditionally meet with their state senators on Capitol Hill, and the President of the United States during a visit to the White House. They then take a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. There, champions meet Children’s Miracle Network Hospitals sponsors, hospital representatives and media partners who all convene to celebrate a year of medical miracles during the Children’s Miracle Network Hospitals Celebration event at Walt Disney World Resort.

Thursday, April 21, 2011

Clayton's Story

Age 8

Johns Hopkins Children’s Center

Immune system disorder

Watch Clayton dig for buried treasure in his backyard and you’ll see his enthusiasm for life. You’d never know that underneath his pirate hat, 8-year-old Clayton suffers from a life-threatening illness with no cure.

Shortly after he turned 2, Clayton began experiencing high fevers that wouldn’t respond to treatment. Doctors discovered that his lungs were covered with infection. Time was running out as the infection seemingly spread out of control. He was sent to Johns Hopkins Children’s Center where doctors diagnosed Clayton with Chronic Granulomatous Disease (CGD), a rare immune system disorder that prevents Clayton’s body from fighting off mold and bacteria like a normal body does. Missing this key part of his immune system makes Clayton highly susceptible to infection caused by certain bacteria and fungi.

The road to recovery was hard, and Clayton endured many procedures, painful tests and surgery. Six years later, Clayton takes daily medication and injections three times a week without complaint. He knows he will have to live with his illness the rest of his life, but he is determined not to let it stop him from living like a normal kid.