Evelyn Grace Foundation awards first grant

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Evelyn Grac

The rain was unstoppable Saturday, Dec. 18, but the heart of the Evelyn Grace Foundation kept beating.

The group was set to hold a bake sale for which it had prepared for weeks to raise money to battle cancer – especially the kind that hits little children, babies actually, innocent and struggling for a toehold on life.

The event was supposed to be held on Main Street in Seal Beach. It would have, but the rain came down, like tears from heaven. The volunteers gathered had to wonder if the bake sale was meant to be.

At the last minute the group found an angel in the manager of (Seal Beach) Pavillion’s.

“He was very gracious and allowed us to set up at the entrance of Vons,” said Bobbie Doyle.

Doyle and her husband had lost their infant daughter Evelyn Grace to leukemia, which is a form of cancer.

“It is unfathomable to hear the words ‘your child has cancer,’” Doyle said.

Approximately 12,400 children are diagnosed with cancer each year. Acute Lymphoblastic Leukemia is the most common, followed by brain cancers.

Since then, the Doyles have channeled their pain and loss into raising money to fund research to help save other children.

The Evelyn Grace Foundation is helping bring awareness to infant leukemia and doing its part to raise funds for pediatric cancer research and EGF programs which bring support to children of families affected by cancer.

Saturday’s bake sale was another drop in the bucket toward their mission.

“We certainly did not reach our fundraising goal but it was still a success” Doyle said. “We had an enormous amount of baked goods all provided by volunteers. It was incredible to see how many people wanted to be involved and spent their precious time baking for us.  We were not able to sell everything so we began taking trays and giving away goodies to local businesses on Main Street, the fire station and local churches.”

Despite the rain, they raised nearly $1,200, which covers a portion of the cost of the five families we adopted for the holidays.”

Despite the fact that it has been in operation for less than a year, the Evelyn Grace Foundation has already progressed in its goal to fund cancer research.

“We are proud to award our first grant of $10,000 to further pediatric cancer research at Mattel Children’s Hospital,” Doyle said. “The UCLA Nelson Lab and Mattel’s Division of Pediatric Hematology/Oncology’s Genome Study is the recipient of the award.”

The purpose of the grant is to contribute to the Nelson lab genome sequencing project, which studies the mutations in the coding DNA of tumor cells from samples of infant acute lymphoblastic leukemia patients. It is one small step closer to learning more about this aggressive form of leukemia and finding a cure.

And so, a variety of sweet and savory treats were available including artfully packaged cookies, breads, and cakes outside Vons on that rainy day. All proceeds support Evie’s Bundle of Love, a Foundation program, which provides baskets of comfort items to children who have been recently diagnosed with cancer and their families.

The Foundation also contributes to Mattel Children’s Hospital Holiday Adopt-A-Family program to provide gifts to economically challenged families who are affected by pediatric cancer. For this Holiday Season the Foundation sponsored five families by providing gift cards to the parents for essential items such as groceries and household supplies, educational and comforting toys and clothes for the children.

“The Evelyn Grace Foundation is a deeply personal endeavor for us,” Doyle said. “The excitement of welcoming our first child to the world turned to fear and confusion when she was diagnosed with congenital acute lymphoblastic leukemia shortly after her birth. My pregnancy had been normal and uneventful, but suddenly we were faced with NICU and no certain outcome.”

With an extremely low chance of survival, Evelyn bravely fought her battle against cancer for nearly five months.

“We didn’t care about the statistics we were given,” she said. “After-all, statistics are merely the measure of an average and scientist do not have enough documented cases to provide a truly accurate percentage.”

They held on to hope until the very end.

Evelyn passed away on August 16, 2009, spending nearly her entire brief life in the hospital.

Evelyn’s blood, preserved at Mattel Children’s Hospital UCLA laboratory may provide some crucial answers to the complex questions behind infant leukemia.

Evelyn Grace Foundation is focused on research for less common and less curable childhood cancers.

For Evelyn’s cancer- congenital acute lymphoblastic leukemia, there is little research and few treatment options.  Infant leukemia is particularly aggressive and too often fatal, odds of survival greatly reduced the younger the age of diagnosis.

Evelyn had every possible negative diagnostic factor against her.  She was born with leukemia. It had already made its way into her cerebral spinal fluid, in her skin and she had an extremely high count of malignant (blast) cells. It was unbearable for her parents and after each diagnostic test, there was more crushing news.

“Because of our insight into the devastating experience a child’s cancer diagnosis brings to a family, we created the Foundation’s ‘Evie’s Bundle of Love’ program,” Doyle said. The Evie’s Bundle of Love is filled with a variety of necessities a child and family might need when unexpectedly admitted to the hospital. The gift basket includes items such as a soft comfort blanket or a cozy kids robe, a plush toy, a folder to file medical records for parents, gasoline/grocery gift cards for parents, hospital meal coupons and a crochet flower hat provided by the group’s partner, Simply FaBOWlous (FaBOWlous.com).

Because all members of the board have full time careers and the foundation has no paid employees, it relies on its` board members and volunteers.

The foundation operates primarily through grassroots and inventive fundraising efforts.

The inaugural year as a foundation has been challenging in many ways but not without reward.

“Through the valiant efforts of our board members and supporters we have been able to directly assist 20 families who are experiencing the devastation and isolation that is pediatric cancer,” Doyle said. “We contributed to research in a small way but it is our hope by raising awareness that we will be able to increase that amount in the coming years.”

Research is expensive, but experts say it is the key to a cure.  There are general statistics regarding pediatric cancer and leukemia which indicates that survival is on the rise.  Unfortunately, that is only a snapshot of the overall pediatric cancer population.  Outcomes vary widely for many different forms of leukemia, depending on age of onset, type of disease, biological and other risk factors at the cellular level.

“If you knew that in your lifetime you could help increase the chance of survival for a specific type of pediatric cancer, i.e. infant leukemia, would you get involved?” Doyle asks. “I hope there is a cure in my lifetime, but at the very least, new treatment options will be discovered and the overall survival rates will improve for all types of pediatric cancer.  I want to be a part of making that difference.”

Evelyn Grace Foundation can be found on the world wide web at www.EvelynGraceFoundation.org

Contact: Bobbie Doyle

Address: PO Box 463 Seal Beach, CA 90740

Alternate Phone Number: 562-296-5347.

Email:

Bobbie@EvelynGraceFoundation.org. URL:  http://www.evelyngracefoundation.org

For reliable childhood cancer information: www.curesearch.org.

Evelyn Grace Foundation awards first grant