Ben's urgent life-saving cancer op

£110,148 of £100,000 goal

Raised by 1,867 people in 15 months
Created August 23, 2017
Ben Tylecote is our wonderful, kind hearted, intelligent 13 year old boy. He loves sport and desperately wants to go back to school.

Ben has a very rare cancerous tumour growing behind his right eye.

This week, the NHS told us that they could not fund the £100,000 needed for an operation scheduled for the 4th September to remove his eye and the tumour. Ben urgently needs this treatment in the next 2 weeks, the advice from our consultant is that we cannot wait until September 13th when the decision to deny funding may be reviewed. The NHS have been fantastic but this is an aggressive cancer and time is critical.

We must find a way to raise the money ourselves.



Ben’s story

Ben Tylecote is normal, sporty 13 year old boy who goes to the local school, Catmose College, Oakham. We noticed that Ben’s right eye was sticking out last summer and he was diagnosed in June 2016 with a tumour in the muscle behind the eye - Rhabdomyosarcoma.

He has endured a year of chemotherapy and proton beam therapy and had his 13th Birthday in hospital having chemo. Despite Ben’s inspiring emotional resilience and determination to move forward, the tumour hasn’t shrunk and the need for surgical intervention has reached a critical stage in order to prevent the cancer from spreading. The tumour is continuing to grow and now Ben can’t use his right eye at all. Last month, we were all ready for surgery to have the eye removed but it was called off at the last minute to review all options.

The NHS medical team has referred Ben to an Amsterdam hospital to ensure the best outcome for him. The eye and tumour will be removed and the area will be treated with a localised radiotherapy called brachytherapy, where an isotope is applied locally. This is very specialist treatment and is close to the brain and pituitary gland.
This operation in Amsterdam will cost at least £100,000 and we were due to fly out next week. The NHS have been fantastic but have denied us funding for this operation.

We have been amazed at Ben’s patience and tolerance throughout all the treatment. He has missed a lot of lessons this year and has visited his school to help the other children learn about cancer and that it is not contagious!



We are having difficulties with the NHS funding. Please help us in any way you can.

Thank you

Steve, Fiona, Ben and Jamie
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So we have made it to September and the start of the new school year. We are delighted to be able to tell you that Ben has started back at school with his old school friends.
Following on from the removal of his eye, Ben’s maintenance chemotherapy continued until June, it was tougher than we had anticipated but even so he completed it without any major problems.
Since then Ben has continued to gain strength, and today he received his prosthetic eye. Just one more step back to normality.
As he started back at catmose, for the first time attending it with his brother, he was perhaps the only pupil delighted to be returning to school!
We would like to thank the medical staff and associates involved in Ben's treatment, all of whom have been phenomenal in their care and professionalism. These include the proton beam staff in Oklahoma; the multidisciplinary teams in Amsterdam, and all the people in Leicester, particularly the wonderful Oncology doctors, nurses and support crew up on Ward 27. You don't want to ever have to meet them, but if you have to, you are glad they are there.
And then, once again, we would like to thank you all for the incredible support you have shown our family, without you all we would not have got this far.
Thank you all
Fiona, Steve, Ben and Jamie
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Happy New Year to you all.

2017 was a rollercoaster of a year and we would like to update you a little. Your incredible support and generosity meant that Ben was able to have the urgent surgery and radiotherapy in Amsterdam. Once again, we want to thank you all so much for giving Ben the best possible chances of success.

The Dutch and NHS teams are very pleased that everything went to plan and Ben continues to have active cancer treatment in the UK with the NHS for at least another seven months. Chemotherapy, scans and vigilance will continue to be part of normal family life.

Ben had Christmas and New Year at home with his family and friends. It was in between chemo treatments so he was able to be with school mates a bit. He is keen to get back to his school work if possible and home tutoring has re-started. We are all learning about cell structures, the periodic table and some French!

We send you all our heartfelt best wishes for 2018.

Steve, Fiona, Ben and Jamie

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Two words just don't seem enough but THANK YOU.  Steve, Fiona, Ben and Jamie are staggered and truly touched by people's generosity and kind words.

We are over the moon that we reached the target. This gives Ben the best possible chance for the future.


Thank you again - you are all amazing

Love,

The Tylecote Family.
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Thank you for all your amazing support. We have reached the half way mark. Ben had a tough day today but is still smiling as you can see.
Love
Steve, Fiona, Ben and Jamie Tylecote
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£110,148 of £100,000 goal

Raised by 1,867 people in 15 months
Created August 23, 2017
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