Happily Ever Annabel

27/04/2026

We're waiting for a template letter from SKC for people to send to their MP. We'll share it here with you when we can.

Our own MP, the wonderful Mark Ferguson, is already on this and doing his damnedest to help.

Let's not allow the door that opened for Annabel, close behind her. Other children need this medicine.

We have shared an important update about DFMO (Iwilfin / eflornithine) and UK access on our website.

You can read this update at www.solvingkidscancer.org.uk/dfmo-update-2026

We remain committed to keeping families informed with accurate updates as soon as we have them, and to advocating as strongly as we can for UK children and families.

We will continue to share updates directly with families as well as keeping this statement up to date on our website as any new information becomes available.

Our Family Support Team is here to listen and to support you emotionally and practically. You can contact the team by telephone on 0207 284 0800 or email: support@solvingkidscancer.org.uk.

24/04/2026

Shocked and saddened to discover today that DFMO - the drug that we fought to make available for Annabel - is no longer being made available for new patients. And that international access routes are also being limited.

New cases will be considered individually and families are no longer guaranteed free NHS access to this potentially life-saving drug.

We are super sad that the door we helped crack open has closed behind us.

Until we experienced childhood cancer, we assumed it was top priority for research and treatment. But it is so underfunded and underprioritized, leaving so many little lives at risk.

If you'd like to help, you can write to your MP. We'll try to get a template letter from one of the amazing charities dedicated to neuroblastoma in the UK Solving Kids' Cancer and Neuroblastoma UK

11/02/2026

30/12/2025

Annabel wanted to share this photo of her modeling the new Stand by Benny hat that we got yesterday.

Benny is Annabel's friend from hospital. They went through treatment together for the same awful cancer. And Benny has sadly relapsed recently.

His family are now supporting Benny through treatment again, back in hospital constantly, while also trying to raise nearly £400,000 for more advanced treatment in Italy.

It is every HRN parents' worst nightmare. And they're just doing amazingly.

You can buy a hat or donate to Benny's fund on their page. Please like and follow it and share their posts to help his story reach as many people as possible.

Happy Christmas all x

10/12/2025

It's Annabel's birthday today! What a difference two years makes!

We 'celebrated' her 5th birthday assuming it could be her last. We're celebrating her 7th in the hope there'll be another 100 to come!

A few people have kindly said they'd like to send a little gift to Annabel to help celebrate. But she's already been spoiled rotten!

What would really mean the world would be if you could support Annabel's friend Stand by Benny. Benny has the same as Annabel and has sadly relapsed one year after ringing the bell. His family needs to raise £393,000 for life-saving treatment in Rome.

Please follow his page and make a contribution if you can. Even pennies and pounds add up. Thank you xx

02/12/2025

Meet beautiful BENNY.

Benny and Annabel were side-by-side throughout their treatment for High Risk Neuroblastoma. He's the sweetest little fella and they're they most gorgeous family.

Benny has relapsed recently - the very thing we fundraised to try to prevent for Annabel - and his family are now trying to raise money to get him to Rome for life saving treatment.

It is the nightmare no HRN parent wants to face and so cruel.

Please follow their page and get to know this gorgeous, happy, dinosaur-loving little cutie. They need all the support and publicity they can get xx

Follow the page here

https://www.facebook.com/share/16XD66DrG8/

Donate here if you can 🙏

https://www.justgiving.com/campaign/benjaminahmanizad

08/11/2025

That magnificent bit of treachery gets researchers another step closer to beating Neuroblastoma, and helps raise awareness for the cause. Nice one Alan. Best Traitor ever!

Neuroblastoma UK Patron Alan Carr has won the hit BBC One show The Celebrity Traitors, produced by Studio Lambert. While bluffing, scheming, and deception may be the name of the game, one thing is certain: Alan remains truly faithful to Neuroblastoma UK.

14/08/2025

Hi all 👋 It's been a while. It just occurred to me that we haven't given you an Annabel update since she received her essential medication. We've been too busy living life and making precious memories.

So here she is! This is what one year of post-chemo hair regrowth looks like! Currently dyed pink for the summer holidays.

She's full of beans and doing really well. She's done fantastically at school this year (her first year!) and made up for everything she's missed. She runs us ragged with her energy, which we have to remember is a really good thing!

Her new medication is going well. Sadly many children have had to stop using it due to side effects, like hearing loss, but so far so good here.

Thanks to everyone who has asked and continues to think about us ❤️❤️

12/07/2025

Hi Everyone, some great news about the Rare Cancers Bill: It had enough support from MPs and passed its third reading in the House of Commons, so now it's off to the House of Lords! A *huge* 'thank you' to everyone who got in touch with their MP!

Getting these reforms through Parliament is a complicated process, so here's a link to a statement from one of the (many) charities backing the Bill with more detail for anyone who wants it:

https://www.neuroblastoma.org.uk/news/rare-cancers-bill-passes-third-reading-in-house-of-commons #:~:text=The%20Rare%20Cancers%20Bill%2C%20led,childhood%20cancers%20such%20as%20neuroblastoma.

The Rare Cancers Bill, led by Scott Arthur MP, has today passed its Third Reading in the House of Commons, bringing renewed hope to those affected by rare and less common cancers, including devastating childhood cancers such as neuroblastoma.

09/07/2025

Hello Everyone! We have a favour to ask - If you'd like to help get the Rare Cancers Bill through Parliament this week (a good cause, and one close to our hearts) please write to your MP and ask them to support it!

Here's the text of a form-letter that's been put forward by the charity Solving Kids Cancer UK:

RE: URGENT: The Rare Cancers Bill is at risk – we need your help
[Your Name]
[Your Address]
[Your Postcode]
[Your Email]
Dear [MP Name],
As your constituent, I’m urging you to declare your support for the Rare Cancers Bill, introduced by Dr Scott Arthur MP, by attending its third reading on Friday 11 July at 10am.
An amendment has been tabled by Sir Christopher Chope MP that may trigger a vote. If there are not enough MPs present, the Bill risks falling - a devastating outcome after so much progress.
This transformational Bill would improve access to clinical trials for people living with rare and less common cancers - which make up 47% of UK cancer diagnoses and 55% of cancer deaths, yet remain significantly under-researched.
Other countries have taken measures to incentivise pharmaceutical companies to invest in clinical trials for rare cancers and the UK has fallen behind. This means that Rare Cancer patients in the UK are missing out on potentially life saving clinical trials, with a recent survey from Cancer52 showing a staggering 82% of those with rare and less common cancers were not consulted on joining a clinical trial.
This Bill offers new hope for those diagnosed with rare cancers, with a plan to incentivise new, cutting-edge research.
The Rare Cancers Bill will:
Appoint a named responsible lead for the delivery of rare cancer research, providing greater accountability, facilitating collaboration and long-term coordination for the UK’s research landscape.
Commit the Government to review the UK’s Orphan Drug Regulations, examining what can be done to improve the regulations to support the development of treatments for rare and less common cancer treatments.
Ensuring that patients can be easily contacted about relevant research and clinical trials, thereby improving access to trials and the quality of trials in the UK

As your constituent, I strongly believe that supporting this Bill is a crucial step toward improving outcomes for those affected by rare cancers. I urge you to represent the voices of those living with these devastating conditions and declare yourself supportive of the Rare Cancers Bill.
Please CC RareCancersBill@h-advisors.global in your response, as they are tracking which MPs are supporting the Bill.
Yours sincerely,
[Your Name]

04/03/2025

Annabel's running the Junior Great North Run this year - and I'm running the big one again - to raise money for The Christie specialist cancer hospital in Manchester, who treated Annabel and so many of her little pals. I've just set up our page so thought I'd share it.

I will find a better photo for it! But that's Annabel ringing the bell at The Christie after completing her treatment there - treatment that we had to fight like hell to get, but which was kinder and less likely to lead to secondary cancers due to lower radiation.

We have no expectation of donations from our wonderful supporters here after you've done SO MUCH to directly support Annabel's treatment fund. But if you happen to be an eccentric millionaire looking to spend a few £££, feel free :-)

Help Elizabeth Ashmore raise money to support THE CHRISTIE CHARITY