September 17th, 2018: September is Childhood Cancer Awareness Month which brings attention to the problem of childhood cancer, the challenges of treating cancer in children, the underfunded research in childhood cancer, and all the issues associated with a child battling this disease, including grief and bereavement.
A Sibling’s Wish is a UK based charity that was founded after the loss of a child to childhood cancer. The charity was founded in August of 2016 by Sarah, the mom of Harvey Hext a young boy who passed away on November 29th, 2015, following a long battle with stage 4 high-risk neuroblastoma.
Harvey became well known not only in the UK but around the world for his friendship with One Direction Louis Tomlinson and his mom Johannah Deakin. Johannah was the first to meet Harvey and his family at a Believe in Magic event in 2013 at the London Zoo. Harvey had been diagnosed with stage 4 high-risk neuroblastoma at the age of 3 in 2010. His parents had noticed that the previously active 3 years old had started having problems walking, was complaining of a tummy ache, and had diarrhea. Following a doctor’s visit, Harvey was referred to a specialist in Bristol who gave the family the devastating news after blood tests, CT scans, and biopsy of a tumor. The Hext family also found out that Harvey was an extremely rare case because there are very few children in the world with Down Syndrome that are diagnosed with neuroblastoma. Following the diagnosis, Harvey underwent surgery, chemotherapy, and radiation and was declared in remission. Unfortunately, in October 2014, cancer returned and Harvey had to undergo another surgery to remove a tumor in his chest. Other tumors found in his abdomen though were deemed too dangerous to operate on.
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When Johannah Deakin met Harvey and his family at the Believe in Magic event, she was so moved by his story that she immediately told Louis. After hearing about Harvey, Louis decided to do as much as he could to support Harvey and his family and to give them precious memories to hold on to. Louis sponsored a vacation to Disney World in Paris, VIP treatment at a One Direction concert, and numerous personal gifts to Harvey and his family. When in August 2015 Johannah and Louis organized and sponsored the Believe in Magic Cinderella Ball for sick children, they treated Harvey and his entire family to VIP treatment. During the many months that Harvey’s and Louis’ families were in touch, they developed true friendships. When Harvey passed away, Louis posted the tweet “Fly high buddy” showing a picture of Harvey with his huge smile.
During Harvey’s battle with neuroblastoma, the family had set up the Harvey Hext Appeal, a fund that through donations, helped pay for the costly cancer treatments for Harvey. The remaining of the funds that the family did not use, were donated to Solving Kids Cancer, after the passing of Harvey (read our article here).
After the passing of her beloved Harvey, Sarah had the idea of setting up A Sibling’s Wish to provide comfort and support to siblings of children that pass away. The idea came to Sarah from personal experience. The Hext indeed have other two children, Spenser who is Harvey’s twin brother, and older Olivia. Sarah realized early on that bereaved siblings have indeed very little support. Parents spend so much of their energy attending the sick child and dealing with their own loss after they pass away that they have little time and energy to dedicate to their other children. Hospitals and end of life care teams agree that there is definitively a huge void when it comes to supporting children experiencing the loss of a sibling.
The idea behind A Sibling’s Wish is simple: create beautiful and personalized memory boxes where the bereaved child can store photographs, notes, and other memories of their lost sibling. The memory box can help challenge some of the feelings of loss and can be cherished for years to come. Sarah adds to the donation also a stuffed bear named Harvey which has a hidden pouch where the bereaved child can store the most precious memory of their sibling.
From its inception, A Sibling’s Wish has made huge strides and it has become so active recently that it has needed to move its activities from the Hext’s family home to an office space. Louis Tomlinson has continued to support the charity from behind the scenes including donating a brand new laptop in the early days of the charity.
Some of the achievements of A Sibling’s Wish and its founder Sarah Hext over the last two years are:
- In 2016, soon after becoming officially registered as a charity, A Sibling’s Wish became an official partner charity of . #UKCharityWeek is a week during which donations and fundraising are encouraged to help UK charities. This week usually falls within the first two weeks of December, when people are more willing to donate since the holidays are just around the corner.
- Also in 2016, A Sibling’s Wish became affiliated with Together for Short Lives, a UK based charity which speaks out for children and young people who are expected to have a short life.
- In 2017, A Sibling’s Wish became Peace and Coffee’s charity of the year. Peace and Coffee, a company that distributes organic coffee and tea, selects a handful of charities each year to be voted the charity of the year. As the 2017 winner, A Sibling’s Wish received all proceeds donated between 04 August 2017 and 03 August 2018.
- In October 2017, Sarah Hext attended the Women of the Year Lunch. This is an event that celebrates and awards women that would not be otherwise recognized for their work. In attendance was also Camilla Duchess of Cornwall.
- A few days ago A Sibling’s Wish celebrated its 300th memory box. In only 2 years from the day they became a registered charity A Sibling’s Wish has distributed these many memory boxes all over the UK. Indeed Children’s Hospice Southwest, one of the first entities to express interest in the memory boxes, estimated that they would need approximately 60 boxes per year.
A Sibling’s Wish is doing important work to fill a void in the support of families that experience the loss of children to childhood cancer and other diseases or accidents. We expect them to continue their amazing work and we hope they will expand even more with their work to reach all the families in need in the UK.
We have talked about Harvey and Sarah numerous other times. To learn more about them and the work that A Sibling’s Wish does, check out our articles dated 10/27/17, 7/30/17, 11/30/16, 9/8/16, 7/19/16, and 5/30/16. Visit also their official website to learn more about how you can help.
Pictures are credited to A Sibling’s Wish website, FaceBook page, and Twitter account.