SARASOTA - Like many elementary school children, Hannah Marsh has a large family album full of photos and drawings. But the bright playful colors are deceiving, camouflaging dark days when death hovered near by.
"She woke up one morning with a nosebleed." Kelly Marsh, Hannah's mom, remembers vividly the day it all started. "I went to wipe the blood away and there were spots all over her skin."
Rushed to the hospital, tests showed Hannah's platelet count so low, it was life-threatening. Her mom said, "The nose bleed lasted for four hours. We had nurses coming in around the clock. I couldn't even hold my hand up that long. We had buckets and buckets. At that point they were giving her infusions left and right."
Finally, a diagnosis: Hemophagocytic Lymphohistiocytosis, or HLH. A difficult name for a deadly disease. Kelly explains, "It's basically your immune system fighting from the inside out, and it attacks almost every organ. It affects all your blood counts, your liver, spleen, brain and everything."
And the news kept getting worse. "It's a fatal disease. The only cure is a bone marrow transplant."
Twenty-five percent of the time, a match can be found in the family. Not so in Hannah's case. "We had no choice. We went to The National Marrow Donor program. 'Be the Match' ended up doing the search for us. There was no match for her in the United States."
They ended going to the International Registry, where they found one match out of 14 million registered participants. Kelly adds, "It's a 50/50 chance you even get to transplant if you are diagnosed correctly."
Flown to Cincinnati Children's Hospital, which specializes in treating HLH, chemotherapy, steroids and blood transfusions kept her alive until the bag of donor cells finally arrived from overseas.
The bone marrow transplant took place. Isolation followed. Mom and daughter documented their journey on You Tube and slowly Hannah healed, re-entering life a success story among so many sad failures. Kelly says, "HLH is known as the silent killer because usually it's diagnosed postmortem."
Thankful for this second chance, the Marsh family began spreading the word about HLH and the importance of the bone marrow registry but something seemed unfinished, one 'Thank you' unresolved.
Unknown to Hannah, her mom and dad had planned a surprise meeting at Tampa International Airport with her donor, a young man living in Germany.
He'd put his name on the bone marrow donor registry on a whim - while giving blood one day. His name is Patrick. "Now, since I'm here, I kinda get the emotional part of what it all means but when I did this, when I was laying there, it was just four and a half hours of my life and that's it. Oh, and a couple of syringes. It didn't feel like I as doing something big at all."
But what Patrick did was save Hannah's life. Now three and a half years later, the donor and recipient got a chance to meet and celebrate.
Patrick has a message about how easy it was to become a game-changer in a little girl's world. "In my case, they did a stem cell apheresis where you just lay on a bed, spread your arms out, and they filter it out." Patrick says, "It's only about 4 and a half hours and it's a bit uncomfortable, but that's it. Then the bag goes off on the plane and it's really exciting to see."
"My hero is Patrick, my donor." Hannah exclaims. She recognizes what she and her donor now share. "I had straight blonde hair, but I lost it all in the hospital and I got Patrick's hair."
Now, the new blood brother and sister want to inspire others to be the match for someone else.
Hannah wants to be a doctor when she grows up so she can help others the way her doctors helped her.
If you would like to help, join us on Sunday, April 1, at Al Lopez Park, located on Himes Avenue in Tampa for the first "Be the Match, Be the One" run here in our state.
ABC Action News will have a team running (or at least walking) in the race. Consumer reporter Jackie Callaway will be there, as well as traffic reporter Meredyth Censullo and others.
For more information, visit www.betheonerun.org .