This Week in Neuroblastoma – 12/31/13

As 2013 comes to an end, we wish to extend our thanks to our volunteer board, those who have donated, planned or attended a fundraiser, volunteered, or contributed some way to Because of Ezra’s continued mission to end neuroblastoma. We are hopeful and optimistic about what 2014 has in store for neuroblastoma research. Happy New Year from all of us at Because of Ezra!

Here’s this week’s links…

Kids – Why We Fight

Alexandra Lynn Cafferata

It grieves us to share after a 10 month battle with a rare form of neuroblastoma called Estesioneuroblastoma, Alex Cafferata tragically passed away on December 28th. Estesioneuroblastoma begins in the part of the brain that interprets smell and causes a tumor to form behind the nose that may affect the sinuses, according to the Mayo Clinic. Kim Cafferata, Alex’s mother wrote the following on Alex’s Facebook page, “At 6:35pm my sweet baby girl Alexandra Lynn took her final breath … She was such a strong fighter but the monster we call cancer won this battle… She was fighting up until her very last second on this earth and her last words were her yelling at someone fighting for something she wanted… Please, please hug your children and loved ones extra tight tonight… Family is everything.” Our thoughts and prayers go out to the Cafferata

Melaney Jayne Holden

Melaney Jayne Holden, 8 years old, passed away from neuroblastoma on December 28th after a courageous 18 month battle. Melaney Jayne is survived by her parents, Lisa Basiliere Holden & C. Byron Holden, Jr. and two younger sisters, Lindsey and Audrey. Please keep the Holden family in your

Non-Profits / Events / News

Nine-year-old cancer patient allowed to spend Christmas at home

After a 3 month stay in isolation, advanced stage neuroblastoma fighter Mackenzie Furniss received one of the best Christmas gifts this year-she got to go home to be with her family. Mackenzie’s family has been eagerly fundraising to help cover the expenses for experimental stem cell treatment Mackenzie will be starting in Germany this coming year. Best wishes to you Mackenzie!

Brave Alfie gets trip of a lifetime to Lapland after beating cancer

After receiving pioneer treatment in Austria for neuroblastoma, 7 year old Alfie Sharpe was given the “all clear.” To celebrate this news, Alfie and his father were invited to go to Lapland, Finland. Alfie, who will need a further op to remove the rest of his tumour, said: “I was told if I ate and drank, I could go to Lapland to meet Santa.” Alfie, we hope you and your dad had a wonderful time in Lapland! You’re in our prayers!

Hoddlesden cancer battler Sam Shaw visits Santa

4 year old Sam Shaw was able to enjoy some Christmas cheer last week in Philadelphia. Sam, who is battling neuroblastoma, was able to play in the snow, meet Father Christmas, Christmas Tree lightshow in Macy’s, and got to meet Santa—twice! Sam’s mom Christine stated that, “this has been a very difficult year for us but Sam has stayed amazingly strong throughout. After his last course of antibody treatment, he really did suffer, but he came around and our happy smiling little boy has been back enjoying Christmas.” Sam, we hope you had a memorable Christmas and we pray that you are doing well after your third round of immunotherapy!

Home for Christmas: The little superhero who stole Plymouth’s heart

Four year old Henry Hallam has been fighting neuroblastoma for fifteen months and has been receiving intensive treatment at Bristol Children’s Hospital. Last Christmas, Henry was able to leave the hospital but was unable to go home and his family was fearful that they would be celebrating their last Christmas together as a family of four. Fortunately, Henry was able to go home for Christmas this year! Henry’s parents write, “It doesn’t matter where we are or what we’re doing, just as long as we are all together, the four of us, that’s what matters. Here’s to a healthy and happy 2014.”

Santa fulfils Fraja’s Christmas wish

Five year old MYCN-amplified neuroblastoma fighter Fraja Simpson received an amazing gift this Christmas; Fraja not only met Santa she also was taken by charity When You Wish Upon A Star to northern Finland. While in Finland, Fraja got to see reindeer, went on a huskie-led sleigh ride through snow-covered forests and met with elves sorting children’s letters in Santa’s post office. Fraja’s mother, Michelle, said, “It was out of this world, Fraja had the most fantastic time. It was wonderful to watch her face, she grinned like crazy.” To stay up-to-date with Fraja’s journey with MYCN-amplified neuroblastoma, including upcoming fundraising events, please visit her Facebook page at:

Teacher may embark on a unique first kiss, for a cause

Lace up your kicks and pucker up?! Jenna McConaughy, a middle school teacher at Harbor Montessori, plans to run the Tinkerbell Half-Marathon at Disneyland in honor of her husband’s nephew, Colin, who died at age 2 in January 2012 from neuroblastoma. However, before the gun goes off and the race begins, McConaughy might have to kiss a goat! McConaughy sent home notes with her students about her fundraising goal of $4,000 for the Leukemia and Lymphoma Society. As of today, McConaughy surpassed her goal by close to $400! To follow Jenna McConaughy’s progress or to make a donation, visit Good luck Jenna! And don’t forget your lipstick!

Local family hosts fundraiser for 3 year old daughter with cancer

Two months after their 3 year old daughter was diagnosed with stage IV neuroblastoma, the Clark family will host their first fundraiser. Ryleigh Clark’s symptoms included fatigue, fever, and limping from a hairline fracture in her leg caused by neuroblastoma. We are praying for you, Ryleigh!

Hong Kong boy getting final phase of cancer treatment at Wolfson

Colin Lam, 6 years old, has traveled all the way from Hong Kong to receive potentially life-saving neuroblastoma treatment that is only available in the United States. Colin is the first child from another country to receive immunotherapy at Wolfson and Nemours Children’s Clinic in Jacksonville, Florida. This opportunity arose as Colin’s mother, Kay, has an uncle went to high school and college with the wife of Thomas T. Chiu, a neonatologist and former chairman of pediatrics at the University of Florida College of Medicine-Jacksonville. “I really thank God for my uncle, Dr. Pang, and Dr. Chiu,” Kay said. “Without my uncle, I wouldn’t have known about Dr. Chiu and Colin wouldn’t have a chance of getting this treatment.” We are all pulling for you, Colin! Best wishes to you!

Sherston mum says child will be told all about tot who died aged two

Kelly Pritchard’s 2 year old son, Alfie-Ray passed away after an 18 month battle with neuroblastoma. Now pregnant with a daughter, Kelly plans to honor her son by naming her unborn baby Angel-Ray. Kelly says that Angel-Ray “will never meet her brother but she will know everything about him. We will make sure she knows she had a wonderful big brother who meant the world to us.” Along with welcoming a new baby in 2014, Kelly plans to hold several fundraising events with charity Families Against Neuroblastoma in memory of her son. We pray for a healthy delivery of baby Angel-Ray and great success in your fundraising efforts!

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