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$13k raised during walk/ run in honor of local girl

Kyla Blackwood and Aubrey Carpenter
Special to the Enquirer

On March 12, 2010, Ella Kathryn Ray was born to Dustin and Kellie Ray of Decatur. On this day, they were not aware of the hurdles they were going to have to overcome. Here is the story written personally by Ella’s mom, Kellie.

“Ella has quite a long story in her 13 months of life, so I will try to fit it all in!

“Just before her two month well baby checkup, we noticed these little red dots on her that are called petechia. At the pediatrician, they ran a CBC and the results showed all of her blood counts were low. They sent us directly to the St. Jude Affiliate, who then admitted us to Huntsville Hospital. That night Ella had to get a catheter placed in her groin because no one could get a regular IV started. They gave her blood and platelets that night, and the next morning, we were being transported to St. Jude in Memphis. They thought Ella had leukemia. They did a bone marrow biopsy and ruled out leukemia. Within three days, we were sent home. Ella did not get any better and her blood counts continued to drop. We were sent back to St Jude, and they started running other tests to try to find out what was going on. They never could figure out the exact cause. Ella continued to have low blood counts, and then she developed CMV. She got very sick and was put on a ventilator. She continued to get worse, and they decided she needed to be transferred to Le Bonheur Children’s Hospital just down the street. They thought she might have to be put on ECMO (a type of heart and lung bypass machine). Once we got there, they stabilized her and she continued to do a little better each day. She got off the ventilator in about 12 days and we were transferred back to St Jude within about three weeks. During all this time, the doctors were treating the CMV she had. After returning to St. Jude, she continued treatment, and after awhile, her counts started to rise and were showing signs of her bone marrow working. Soon after, they sent us back home.

We were to follow up in Birmingham about her CMV at Children’s Hospital. She was doing really well at home for about two months, and then her counts started to drop to a scary level again. The CMV doctor in Birmingham decided to refer us to their hematologist at Children’s to see if we could figure out what was going on. They admitted Ella into the hospital for one week. Ella had a lot of blood tests run and another bone marrow biopsy done. All the test results pointed to MDS with monosomy 7, which is a type of pre- leukemia. In most cases, children who have MDS with monosomy 7 go on to develop AML (a horrible type of leukemia). Her only hope was to have a bone marrow transplant ASAP. They searched the Be the Match Registry and found her a perfect match! All we know is the person is a male from Europe. The transplant was on Dec. 9 and is providing a new chance at life!”

“From this day on Ella has been in Children’s Hospital in Birmingham improving day by day. Ella has had bad days…she was in the ICU for approximately a month, on a ventilator most of the time, and has had many struggles with her kidneys and liver. On Jan. 23, Ella was moved from the Pediatric Intensive Care Unit back to the Bone Marrow Unit at Children’s Hospital. Since then, Ella has improved. She still has a long road in front of her, but has displayed the strength we could all only dream of having.

“Hopefully Ella will be discharged soon to a home in Birmingham. The Ray’s will have to stay in Birmingham for a couple of months so Ella will be close to the hospital to have her lab work done and in case of any emergencies. A-team Ministries assisted the Ray’s with a townhome until they can go home!! Ella will have to wear a mask in public and they will have to be extremely cautious of her surroundings during this time of recovery and while her immune system builds up. This is from the most recent tests Ella received, “We found out some results from the bone marrow and stomach biopsies. The bone marrow is 100 percent donor and 0 percent monosomy and so far the stomach biopsy is not growing anything and no sign of GVHD (Graft-Versus-Host Disease) as of right now.”

The courage and faith that this family has had through this entire process has been inspiring to so many people. On March 12, Ella’s first birthday, she was honored with a walk/run at Sparkman Park in Hartselle. There were approximately 150 in attendance and over $10,000 was raised along with a $2,500 match from Modern Woodmen-Jennie Jones, for a grand total of almost $13,000.

The organizers would like to thank the following people for their support: Modern Woodmen-Jennie Jones, Dale and Susan Wheeler, Hartselle Sporting Goods, Morgan County Rescue Squad, Hartselle High Baseball Coaches, Pepsi, Southern Printing, Emmett Slone, Sara Beth Martin, Jim and Sara Page, Chris Thompson, Kari Knighten, Lifesouth, Be the Match, Mac Hendrix, Logan Cain, Jerod Johnson, Melody Morgan, Jimmy Hagood, Troy and Connie Woodall, Courtney Rea, Andrew and Elizabeth Dean, Brie Hollander, Julie Suggs, The Corner Bakery, Bailee Williams, and everyone who volunteered or came out to support Ella, Kellie, and Dustin Ray!

For more information on Ella’s story, log on to www.caringbridge.org/visit/EllaRay1. You may also donate to the Ray family at any Redstone Federal Credit Union (Sweet Ella Ray account).