This Week in Neuroblastoma – 1/22/14

It has been said that when something bad happens you have three choices: you can either let it define you, let it destroy you or you can let it strengthen you. This week, we see several families who have made it their life mission to continue on their child’s legacy by raising awareness and funds for neuroblastoma research. We rally behind these families and support their missions.

Here’s this week’s links…

Kids – Why We Fight

Clodagh Daly is a little girl who suffers from a rare type of cancer

We introduced you the adorable Clodagh Daly back in November. At just 5 weeks old, Clodagh was diagnosed with stage 4s neuroblastoma. Clodagh is currently undergoing multi-phase treatment in Crumlin Children’s Hospital, Dublin, and is expected to finish treatment this March. Clodagh’s parents, Tammy and John, are reaching out to get all the help they can, to give their little girl the best possible chance of a cancer-free life. Funds donated to Clodagh will be used to get Clodagh to America in March to take part in a trial treatment. To support Clodagh, please visit https://www.facebook.com/theclodaghdalytrustnewstalk.ie.

Tayah Fairbrother, 5, dies of cancer

5 year old Tayah Fairbrother has died after a courageous 14 month battle with neuroblastoma. She was the youngest of three children and was surrounded by her family. Our prayers are with the Fairbrother family. simcoe.com.

Non-Profits / Events / News

Day of pampering for young cancer patients

Jaylin Gourrie is a survivor of neuroblastoma. She has now been cancer-free for five years and over the weekend she got the opportunity to be a runway model! Jaylin joined other cancer fighters in the ‘Ultimate day of Pampering’ hosted by the Pediatric Cancer Foundation at Neiman Marcus. “She went a very long time without a smile, through treatment; she’s done a lot of chemo, a lot of experimental. We almost lost her a couple of times and it’s very emotional to see her so happy,” said Jaylin’s mom Maria Gourrie. Sounds like everyone had a wonderful and memorable time!myfoxtampabay.com.

Legacy of Jamie Inglis lives on

Since losing her precious little boy Jamie to neuroblastoma nearly a year ago, Vicky Inglish has taken it upon herself to reach out and help other families battling neuroblastoma. “Ultimately this is Jamie’s legacy. I knew a year ago that something special would come from Jamie’s passing,” says Vicky. Together with the Neuroblastoma Children’s Cancer Alliance UK, Vicky will be supporting parents and their families who are fundraising.yorkpress.co.uk.

Ellesmere Port boxer’s backing for foundation

Professional boxer Paul Butler has become an ambassador for the Amelia-Mae Foundation. Amelia-Mae passed away last year, two months before her third birthday from neuroblastoma. Amelia’s parents Angie and Stewart Davies setup this foundation to raise awareness and support those families that have been affected by neuroblastoma. Thank you, Paul for being a voice for our kids!chesterchronicle.co.uk.

Ruby appeal tops £18,000

Jennifer Pearson took on an epic 12 hour treadmill challenge to raise money for her cousin’s daughter who is fighting neuroblastoma. Ruby Thompson, 3 years old, was diagnosed with stage IV neuroblastoma in 2010. Jennifer said: “We are hoping to raise £20,000 for Ruby’s appeal. The money will go towards Great Ormond Street Hospital where she has received treatment, and towards Ruby’s further treatment in Germany.” Jennifer raised over £18,000 with her treadmill challenge! If you would like to donate to Ruby appeal, please visit www.justgiving.com/ ruby-thompsonthewestmorlandgazette.co.uk.

Fraja undergoes emergency surgery after sudden agony

Please keep 5 year old Fraja Simpson in your thoughts and prayers. She was rushed to the hospital after collapsing in the most excruciating pain she has ever experienced since being diagnosed with neuroblastoma in January 2013.Surgeons removed her appendix and bowel, which were attached, and removed internal scarring as part of an exploratory operation. Doctors remain uncertain as to what is causing Fraja such pain. We are praying for you, Fraja.darlingtonandstockonline.co.uk.

Monroe’s gig to help Tirellan girl battling cancer

On January 30, 2014, a “ceol agus damhsa” fundraiser will be held in Monroe, Galway, Ireland, to benefit 8 year old stage III neuroblastoma fighter Grace Kenneally. It will be a great night of Irish dancing and live traditional Irish music. For more information on Grace’s battle with neuroblastoma, check out Cairde Grace on Facebook. advertiser.ie.

Battersea family campaigns on behalf of lovely Lizzy

Since saying goodbye to their 2 year old daughter, Lizzy who died two days after her birthday from neuroblastoma, Alex and Miriam Bremer are now working diligently to raise awareness of the disease and raising money for the Neuroblastoma Society. Mr. Bremer writes, “Nothing will bring our daughter back, but Miriam and I take great comfort in fundraising.” To make a donation visit justgiving.com/Miriam-Bremer1 yourlocalguardian.co.uk.

Church rallies around girl, 5, with rare cancer

Members of a church in Blythewood, South Carolina came together for a spaghetti dinner fundraiser to help raise funds for 5 year old Sara Duncan. 1,100 members of the Trinity United Methodist church raised nearly $4,000 which will be used to help cover medical expenses not covered by insurance. Great job Trinity United and we give you our best, Sara! charlotteobserver.com.


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