Article: Harvey Hext’s Gift

Article: Harvey Hext’s Gift

July 30, 2017:  This day marks the birthdate for two very special boys, Harvey Hext and his twin brother, Spencer. Together as “partners in crime” they won the hearts of their hometown of Winford, the whole of Chew Valley, and later of people from around the world, by their cheekiness and ability to make people smile.

Many people came to know the twins, especially Harvey, through social media as friendships were made at the Believe In Magic party between Harvey’s mum, Sarah, and Johannah Deakin, (Louis Tomlinson‘s mum). Harvey was there with his family, as he had been battling neuroblastoma  for some time and the Believe In Magic party was given for seriously ill children. Johannah organized the event (which Louis gave for the charity) and spent time getting to know Sarah and Harvey. Being a mum of twins herself, Johannah took his story to heart and told Louis about him. Through Johannah’s support Harvey met Louis and became his friend.

In our “Fly High Buddy” article (Nov. 2016) we shared some of Harvey Hext’s journey,  which began with his diagnosis with neuroblastoma at the age of three. Harvey’s case was a unique one, as he was a very rare documented case of Down’s Syndrome with this type of cancer. While Harvey’s was a rare case, unfortunately many of the difficulties his family experienced in battling his disease are far too common for many other families of children also battling neuroblastoma.

The cancer treatments and therapy available are toxic and can be quite painful for small children. According to statistics from the Solving Kid’s Cancer website in the “high risk” cases, the survival rates sit at 40-50%, dropping to 10% after relapse. Once a relapse occurs, the few treatment options for neuroblastoma have been depleted. This means families must depend on using clinical trials for any additional therapy options.

Added to the stress of trying to find the best trial option for their child, is the exorbitant cost in any trial treatments sought outside of the U.K. (which is where nearly all these treatments are found). Being outside of the U.K. these trial treatments are not funded by the NHS and are extremely expensive. Most families need help to fund these treatments.

sarahBoth Harvey’s mom Sarah and Solving Kid’s Cancer recently posted on social media that the funds for the Harvey Hext Appeal which were initially intended to cover the cost of Harvey’s treatments, will go towards a new clinical trial.

A few weeks ago, Solving Kid’s Cancer posted an announcement about their involvement in a charity-initiated trial to develop a treatment therapy called MiNivAn that’s aimed to increase the survival rate of children with relapsed or refractory neuroblastoma. This trial project is an international cooperative effort, which got it’s beginning as charities and researchers worked together to approach a much-needed therapy treatment in immunotherapy for children with relapsed neuroblastoma. This trial will be the first of its kind to combine two antibodies and targeted radiation into one treatment. This innovative approach will provide a decrease in treatment-stress for a young child.

Solving Kid’s Cancer in their new study post (below) a special recognition for Harvey Hext. SKC also thanked his family, parents Sarah and David, his twin brother, Spencer, sister, Olivia and all the donors that generated funds for Harvey Hext’s Appeal for helping this trial move forward.

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The funds will support the clinical trial aimed at providing a new treatment so desperately needed for children who, like Harvey did, experience relapsing and refractory neuroblastoma. And, should the trial be successful, this treatment would be less toxic and painful on young children than most current alternatives. image

One of the best parts about this clinical trial is that it is a collaborative project between organizations in the UK, USA, and Germany. As a result, should this clinical trial be successful the treatments would be made available equally to all its citizens across international boundaries. These treatments will be done on an outpatient basis from centers located in each country. This collaborative work between countries will alleviate one of the biggest financial burdens on families who have so much emotional stress while caring for their seriously ill child. The money raised through charity fundraising where before was used to help cover a child’s extremely expensive treatments abroad, could now be put towards finding a cure to defeat cancer altogether (information involving the clinical trial MiNivAn is credited to the SKC website)

Harvey’s mum and dad, Sarah and David, shared this about their Harvey’s role in helping to fund the trial initiative moving forward.image

Harvey touched many people’s hearts and we can never express how grateful we are for all the support we received when fundraising for his treatment abroad. Sadly for us, this treatment was never to be but being able to use the funds for this new treatment, giving hope to other families, is a hugely positive step. Families having to raise funds, and travel across the world for treatment that could help their children beat neuroblastoma is an unacceptable situation to be in.

Thanks to Solving Kids’ Cancer’s work and the generosity of the public in supporting Harvey’s Appeal, we’ve been able to bring this treatment to the UK so families won’t have to face this overwhelming situation. Neuroblastoma is difficult to treat and trials are few and far between but without vital funds for clinical trials, children will continue to be taken by this cruel disease and families will continue to be devastated.”   –Sarah and David Hext

You can become involved in helping this trial for treating neuroblastoma by texting DNBL99 £1-10 to 70070 or visit their Justgiving page here.

Harvey’s legacy of giving also carries on through ASiblingsWish, a charity initiated by his mum, Sarah. In August, A Sibling’s Wish will be celebrating their first year as a registered charity in the UK.

ASW provides much-needed support to grieving siblings processing the loss of a brother or sister, by providing individualized personally decorated boxes to hold photo memories and treasures plus a Harvey Bear to cuddle. Find out more about the charity and how you can help on their website.

Photos credited to the Harvey Hext family, A Sibling’s Wish, and from the SKC website.

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