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Families Against Neuroblastoma

FAN Alex Noble

Fundraising for Families against Neuroblastoma - Interim Managers: Baker Tilly as appointed by the Charity Commission

£148,681
raised by 27 supporters
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  • Event: FAN - The Alex Noble Appeal, 31 Aug 2017

Families against Neuroblastoma - Interim Managers: Baker Tilly as appointed by the Charity Commission

Following the Charity Commissions decision to close FAN, JustGiving have been working closely with Steven Law and John Ariel of Baker Tilly Restructuring and Recovery LLP, the Interim Mangers appointed by the Charity Commission in July 2014. Whilst there will no longer be any general fundraising for FAN, the children’s individual pages will continue to fundraise as normal whilst alternative charities with a similar purpose are found to continue the appeals. Baker Tilly have assured us that the funds being raised for individual appeals that are ongoing will be transferred to the appropriate appeals accounts as originally intended. Please direct any enquiries regarding FAN to the interim managers at Baker Tilly.

Charity Registration No. 1135974

Story

You can also donate by text message by texting ALXN93 and your amount £1 -  £10 to 70070.

Alex is a beautiful, happy, energetic, little boy who loves Buzz Lightyear, the Gruffalo, Lego, playing in his garden and having fun with his little brother, Luke, just like most other 3 year olds.

But Alex isn’t like most other 3 year olds - in June 2010, aged 20 months, Alex was diagnosed with the aggressive childhood cancer, Neuroblastoma (Stage 4) and he has been battling this awful disease ever since. After just over a year of frontline treatment, involving intensive induction chemotherapy, surgery, high dose chemotherapy, radiotherapy, differentiation treatment and immunotherapy, and despite having responded well to all of that, his end of treatment scans in June 2011 revealed a new tumour, which meant the devastating news that he'd relapsed just weeks after completing the treatment protocol.

As a result, we know that a cure for Alex is now a very unlikely outcome and treatment options in this country are limited. Alex has been undergoing further chemotherapy at RHSC Edinburgh since June and, unusually in cases of relapse, has responded very well to that, meaning he is currently in remission with no active disease present.  This amazing response means that Alex is now being given a second chance at certain aspects of the frontline treatment.  He is currently undergoing radiotherapy, which is scheduled to finish just before Christmas, and the plan is that he will now go onto high dose chemotherapy for the second time in January next year.

Beyond that however, should he continue to show good progress, our hope is that there may be other options available abroad to try and find a cure for Alex - most likely at this stage is antibody treatment (anti GD2 and IL2) in Germany, which is not available as a standard treatment in the UK.  We are also aware of a number of clinical trials for relapse disease in Germany or the USA onto which Alex may one day be able to enrol. Obviously, any treatment overseas comes at a huge financial cost.

Alex is our pride and joy - such a precious son, big brother, grandson, cousin and nephew, and his bravery and strength have been an inspiration to us all. He's never stopped smiling even when enduring the most gruelling of treatment and his cheeky personality touches the hearts of everyone he meets. Alex turned 3 in September and thoroughly enjoyed playing with all his friends at his Lego themed birthday party!  Needless to say, he is very, very excited about Christmas!

Please help us give Alex the best chance he can by kindly supporting our fundraising programme to give our little boy the opportunity to access cutting edge antibody treatment and/or enrol in a new relapse therapy abroad.

Or you can donate directly to the Natwest bank, account number: 88715795 Sort Code: 55-81-28.

For further details on ways to donate please visit www.familiesagainstneuroblastoma.org.

 

NEW FUNDRAISING EVENT:  'SPARKLE FOR ALEX' CHARITY DINNER, AUCTION & DANCING AT THE CORN EXCHANGE, EDINBURGH ON FRIDAY 23RD MARCH 2012.  TICKETS £60 pp.  TABLES OF TEN.  FOR MORE INFORMATION OR TO BOOK CONTACT BY EMAIL - sparkleforalex@hotmail.co.uk OR VISIT www.sparkleforalex.co.uk

Thanks for taking the time to visit my JustGiving page.

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So please dig deep and donate now.

A donation to a child's individual appeal will be held for the sole use of that child for treatment or for quality of life. Should the child no longer need the money raised in their name, funds will either become available to other children within the charity, moved to our emergency fund, donated to Neuroblastoma research, donated to our general fund, or a combination of all four, as agreed with the family. 

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