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  • parent-involvement-forum
  1. About us
  2. Parent Involvement Forum

Parent Involvement Forum

We are delighted to introduce our new Parent Involvement Forum. The forum is made up of 8 parents who have all been supported by Solving Kids' Cancer at different stages through their child's neuroblastoma journey.

We aim to use the Parent Involvement Forum to engage and consult with parents who use the charity’s services with the specific purpose of ensuring that the voice of parents (and by association, children) are always heard and incorporated into the charity's offer. 

We are not actively recruiting for any further members at this time, but if you would be interested in being a member at some point in the future or would like to learn more about the Parent Involvement Forum, please contact us: [email protected]

Stewart Leaver

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Stewart first contacted Solving Kids' Cancer in Nov 2017 shortly after this daughter Jossie, who was 4 years old at the time, was diagnosed with high-
Stewart with daughter Jossierisk
 neuroblastoma.  The family were treated at Great Ormond Street Hospital, and following multiple relapses, travelled to both Barcelona and Germany to access clinical trials not available in the UK. Sadly, Jossie passed away in Nov 2019. 

Since Jossie’s death, Stewart has continued to take an active interest in Solving Kids' Cancer and wants to use his experiences to help inform the charity’s approach to supporting parents and families. 

Stewart lives in Hertfordshire with his wife Cassie, and Jossie’s younger brother Dougie. 

Published: 9th February, 2021

Updated: 4th October, 2021

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Kate Dixon

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Kate’s involvement with Solving Kids Cancer started in 2018 when her son Magnus was being treated for high-risk neuroblastoma in
Kate Dixon Nottingham.
With the support of Solving Kids Cancer, Magnus went on to access the Bivalent Vaccine clinical trial in July 2019. He remains no evidence of disease today.

Kate has now managed to return to work as a mental health nurse and when not at work is kept busy with Magnus and his big brother’s busy social diaries. 

Published: 9th February, 2021

Updated: 4th October, 2021

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Garrett Fitzgerald

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Garrett with daughter LaurenGarrett’s involvement with Solving Kids’ Cancer started in 2018 after 
his youngest daughter Lauren was diagnosed with high-risk neuroblastoma in July 2018 aged 13. After successful NHS frontline treatment finished in Sept 2019, Lauren completed the Bivalent Vaccine clinical trial at Memorial Sloan Kettering Cancer Center in New York in Oct 2020.  

Garrett is the Director of Freshways and lives in Northern Ireland with his wife Mary Clare and their four children. 

Published: 9th February, 2021

Updated: 4th October, 2021

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Naomi Shefford-Thomas

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Naomi's youngest daughter Phoebe was diagnosed with neuroblastoma aged 9 months and spent almost 4 years undergoing treatment
Naomi Shefford Thomas which she completed in 2019.  The family were supported through much of that time by Solving Kids' Cancer which included help in knowing where to find accurate and up to date information. With the support of Solving Kids' Cancer, the family were then able to make informed decisions with regards to Phoebe’s treatment pathway.
 

Naomi lives in Leicestershire with her husband Russell and two daughters, Amelie and Phoebe.

"I feel honoured to be given the opportunity to be part of the Parent Forum and look forward to being able to contribute to the important work of Solving Kids' Cancer".

Published: 17th February, 2021

Updated: 4th October, 2021

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Claire Donnelly

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Claire was introduced to Solving Kids' Cancer by another family after her youngest daughter
Claire Donnelly Ellen was diagnosed with Stage 4 high-risk neuroblastoma in January 2018 
when she was aged 2.

Ellen underwent treatment in the Royal Belfast Hospital for Sick Children which she completed in April 2019. The family launched a fundraising campaign to enrol Ellen on a clinical trial in New York, with the hope that it would help reduce the risk of relapse. Ellen is currently in remission.

Claire lives in Northern Ireland with her husband Patrick and two daughters, Lucy and Ellen.

"We were very grateful to have the support of Solving Kids' Cancer during our campaign, and also their assistance and guidance in arranging our trips to New York for the duration of the trial. Their help has been absolutely invaluable to our family".

Published: 17th February, 2021

Updated: 4th October, 2021

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Naomi Bentham

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Naomi first became involved with the charity in 2012 when her daughter Anya was diagnosed with stage 4 high-risk neuroblastoma.Naomi Bentham

After Anya needed second line chemotherapy to clear the disease from her body prior to stem cell transplant, it became clear that they may need to access treatment outside the NHS and the UK to give Anya the best chance of survival. Along with an incredible core team of fundraisers, Naomi and her family raised over £250,000. Without support from Solving Kids Cancer, this would not have been possible.

After successfully completing frontline treatment they enrolled Anya into the DFMO trial in Michigan in 2014 with support from their home hospital, Alder Hey, to help to prevent relapse. Anya was the first child from the UK to enter and complete this trial. Naomi has continued to raise awareness of the incredible work that Solving Kids' Cancer does through television and press interviews, social media, and word of mouth.

Naomi has a background in Marketing and Communications and currently manages small businesses social media accounts through her role as a virtual personal assistant. Her life is devoted to having adventures with her husband Graeme, the incredible Anya, their youngest, Noah, and their two dogs, Jack and Louis.

 

Published: 19th February, 2021

Updated: 4th October, 2021

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Leeanne Brennan

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Leeanne's eldest son Zak was diagnosed with Stage 4 high-risk Neuroblastoma, 1 week before his 3rd Birthday in 2015. Zak was treated
Leanne Brennan at The Royal Hospital, Belfast and in December 2016 was no evidence of disease. The family were supported by Solving Kids' Cancer throughout Zak's treatment to fundraise to access the DFMO trial in Michigan. Zak completed the trial 
in January 2019 and his scans have remained clear since. 

Leeanne lives in Belfast with her husband Gareth and two children Zak and Amelia. Zak is now 8 years old, in Primary 4 and living his best life. 

 

"Solving Kids' Cancer took the pressure off us when we most needed it as a family enabling us to give Zak our full attention. They were always there to answer any questions we had or just to support us as a family".

Published: 22nd February, 2021

Updated: 4th October, 2021

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Carrie Wright

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Carrie first became involved with Solving Kids' Cancer when her daughter Lucy then aged 8 was diagnosed with Stage 4 high-risk neuroblastoma
Carrie Wright.

After completing the first stage of front line treatment at Royal Manchester Children's Hospital, Lucy was identified as a refractory patient and as a result, took part in the Minivan trial which was part-funded by Solving Kids Cancer. As the family live in the North of England Solving Kids' Cancer reached out to support the family with their regular travel commitments to Southampton during 2019.

After almost three years of treatment, Lucy was declared No Evidence of Disease in April 2021.

Throughout Lucy's treatment, the family fundraised independently to raise essential funds to get Lucy to North Carolina to take part in the DFMO trial. So far, the family have made three trips to North Carolina (all during a global pandemic). Lucy is tolerating DFMO really well, she's back at school full time and is loving life.

Carrie gave up her career as a HR Consultant when Lucy was diagnosed and devotes her time to Lucy, now age 11, Lucy's younger brother Sam, 6 and husband Richard.

 "I'm so proud to be involved with Solving Kids Cancer. We've had invaluable support during our journey. It's vital that the amazing work continues and that families like ours continue to be supported through what will most likely be the biggest challenge of their lives".

Published: 20th May, 2021

Updated: 4th October, 2021

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Solving Kids’ Cancer UK is a registered charity in England and Wales (1135601), and in Scotland (SCO45094). It is a company limited by guarantee in England and Wales (7208648). The charity and company is currently operating as Solving Kids’ Cancer.