Women of Faith to host drive to save 3-year old Ronan Godfrey

 

BE THE MATCH

Bone Marrow Registry Drive

 

Three year old Ronan Godrey has aplastic anemia caused by a rare genetic disorder called dyskeratosis congenita. With a successful bone marrow transplant, Ronan has a 50% chance of being cured. He has no family match so needs our help. Because of the nature of DKC, each time Ronan receives a blood transfusion, which he is receiving often, it makes it more likely that his body will reject the bone marrow transplant. So time is of the essence.

City of Hope will be conducting a bone marrow (cheek swabbing) drive as part of our Women of Faith Humanitarian Workday on Thursday, April 14th from 12:00 until 5:00 p.m. at Church of Jesus Christ of Latter-day Saints @ 350 Wabash Avenue in Redlands. (We hope the time will be extended into the evening, but at this point we have this time only.) The Redlands Interfaith Council and the Redlands Service Club Council are co-sponsors of the drive.

The registration process will take roughly 10 minutes during which you will be asked to fill out paperwork and give a cheek swab sample. You will be registered until you are 61 years old and will only be asked to donate marrow or stem cells if you are identified as a match for a particular patient in need.

*If you are unable to attend in person you can join online by visiting http://join.marrow.org and enter promo code: Hope4Ronan

To join the registry, you need only to be between the ages of 18 and 60, be willing to donate to any patient in need, and meet the health guidelines. If you are not able to participate, won’t you spread to word to someone who can!

***Questions about joining the registry or being a marrow donor can be answered at www.bethematch.org or you may contact Vivian Abernathy, (626) 283-9182 at the City of Hope.  For information about the drive on April 14th, you may also contact Rosemary Tuohy (909)645-2229 or Jean Arnott (909) 794-0456.

Following is a copy of an article that appeared in The Redlands Facts about Ronan and his family.  You can also see his website,www.Hope4Ronan.com.

REDLANDS DAILY FACTS ARTICLE

http://www.redlandsdailyfacts.com/ci_17544483

Boy in race against time

WENDY LEUNG, Staff Writer

Posted: 03/04/2011 10:24:24 PM PS

FONTANA - It started with a nosebleed.

Ronan Godfrey's parents figured it was a simple case of a toddler picking his nose. But the late-night bleeding lasted three hours.

"It was running like a faucet," said Ronan's mother, Rachel Godfrey.

The paramedics told the Fontana family there was nothing to worry about. But the next day, Ronan's nosebleed returned with a vengeance. This time they took Ronan to the emergency room. There, doctors gave the 2-year-old a preliminary diagnosis of leukemia. He needed two blood and one platelet transfusions.

"He had almost no blood in him," Godfrey said.

In time, doctors realized it wasn't leukemia after all but a type of aplastic anemia that is so rare, there is just 300 cases diagnosed in the world. Unlike many other blood disorders, Ronan's condition is genetic, which means he is desperately in need of a bone marrow transplant.

Today, Ronan's third birthday, the City of Hope Medical Center will host a bone marrow drive in Rancho Cucamonga. On Sunday, the Redlands United Church of Christ, where the Godfrey family are members, will also host a drive. The hope is to find a donor for Ronan so he can get the needed transplant.

Ronan is a cheerful toddler who talks about his aspirations of becoming an astronaut. But Ronan's life has changed dramatically since his first nosebleed in January.

"He can't go near anybody. His white blood count is so low, he just can't get

sick. That would be life-threatening," Godfrey said. "He can go nowhere except the hospital."

It's quite a contrast to a life once marked by playschool, mommy groups and a dance class.

"We had the life," Godfrey said. "Now I can't take him to the supermarket. I can't take him to the p-a-r-k. I can't say it or he'll ask."

On Saturday, hospital officials will register participants in the international Be The Match Registry. To participate, you must be between the ages of 18 and 60 and in good health. The process takes about 10 minutes and includes a cheek swab sample.

If a match is found, the perspective donor will be contacted. If you would like to participate but cannot attend Saturday, you can receive a registration kit by visiting http://join.marrow.org.

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“You cannot do a kindness too soon, for you never know how soon it will be too late.”        Ralph Waldo Emerson