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£6,481raised of £8,000 target by 289 supporters

Weʼre raising £8,000 to support my son and I whilst I receive Proton Beam Therapy for an inoperable brain tumour known as chordoma, a very rare type of bone cancer

Groombridge, Tunbridge Wells, UK

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Story

My name is Sarah and I have the most amazing, beautiful son. His name is Isaac and he is my entire world. I had always wanted a child but sadly circumstances in my life did not work out that way, so 3 yrs ago I decided I was strong enough to do this alone and with the wonders of IVF, in November 2015 my dream came true.

I held him in my arms and vowed there and then that I would always be there for him, love him, support him, help him and guide him through this journey we call life. From that moment on, I was no longer a “me“, WE were an “us”, a team for life.

I never for one second would have believed that less than 2yrs later I would be facing the prospect of having to break my vow - “that I’d always be there for him”.

The first 18 months of his life were the happiest days, watching him grow and develop his cheeky personality made me, for the first time in my life truly happy. We were an indestructible team and we spent all of our time together, we enjoyed normal family life, drives to the seaside, paddles in the sea, walks around parks and trips to the farm, as Isaac adores all animals, tractors and diggers. My life, for the first time seemed to be getting better and for once I was truly at peace and happy.

Then, just over a year ago I started developing severe headaches, vomiting, vertigo and blurred vision. This went on for several months until another symptom developed, I started to leak a clear fluid out of my right nostril. Over the next few months this increased to a few drips every now and then, to pouring out of my nose whenever I moved. By this point I was pretty much bedbound due to debilitating headaches and vomiting.

After months of tests and consultations, doctor’s finally discovered I was leaking brain fluid, better known as a CSF (cerebrospinal fluid) Leak. An MRI scan and a CT scan had revealed there was a “mass” in my brain. This “mass”, as they called it, had eaten into the base of my skull, which had caused the lining of my brain to be pulled down into the hole and tear, creating the leak.

In March, just before my 40th birthday, I had the surgery to repair the CSF leak and while they were in there they took a biopsy of the “mass”. But 24 hours after surgery, I developed meningitis which prolonged my hospital stay and my separation from Isaac, who is just too young to understand what is happening.

Having never left Isaac for more than a few hours, we were apart for 3 weeks. This was extremely difficult for me and even more so for Isaac, he became withdrawn, anxious, wouldn‘t eat and it has also affected his sleep. He has developed a high level of separation anxiety and I know in his little mind he worries that if he leaves my side again I will disappear.

Once I was discharged, I believed we were over the worst and I could begin to gain strength and live my life again with Isaac.

But a few weeks ago I was called back to Kings College Hospital in London to what I naively thought was a follow-up appointment. It was there where I was met by an Oncologist who broke the news to me that I have a very rare type of brain tumour and even rarer type of bone cancer, affecting less than 1 in a milllion people each year and without specialist knowledge this could have easily been missed.

This type of cancer is called a Chordoma - mine is a clival chordoma and the oncologist told me that I have actually had it since birth. The chordoma has eaten into the base of my skull and is situated near my brain stem, optic nerves and many other vital areas. It is not curable but can hopefully be “managed” or at the very least “put to sleep” for a while with radiation therapy.

The next part of the conversation was all a bit of a blur.

Due to the location of the chordoma (tumour) it’s not possible to be surgically removed due to the associated risks. My consultant hopes that a revolutionary type of radiotherapy, called Proton Beam Therapy is the answer. At present there is nowhere in the UK that can help me, so I need to go to either Switzerland or the USA for almost 3 months, where I will have this treatment every (week)day for approx. 8 weeks.

Without this treatment, I will have to face the very real prospect I may never see my son grow up.

Mercifully the NHS has said they will fund flights and accommodation for me and my mum, who will be my carer during treatment. But this is where I need to swallow my pride and ask for help. I NEVER ever imagined I would find myself in the position.

Having been so ill this last year, I am unable to work and struggling to imagine how I am going to manage financially whilst we are away – most of my money currently goes on bills and rent with a little left over.

I need to pay towards Isaac’s flights as there is no way I am going without him. It would destroy him and I know it would not be conducive to my recovery or treatment as I would miss and worry about him too much, especially knowing how he has been since my first admission into hospital. Passports and possibly visas to pay for are just the start - I have no idea how I will pay for the day to day living costs whilst we are away. In addition, my mum will lose 3 months pay whilst she is not working, as she cares for me (and Isaac). Any additional money will be used to support me and my family through my recovery.

I need to try and put all of my energy into getting well and focusing on everything positively, but this financial aspect is causing so much stress and uncertainty. I want my son to be as unaware as possible of any of this stress, he has picked up on so much already and it’s breaking my heart.

❤️💙Thank you for taking the time to read my story💙❤️

If you feel you can help with any donation, no matter how much, Isaac and I would be so very grateful.

I would like to make this “trip” as stress free and fun for isaac as possible. With help from you all I hope he will be able to have fun days out with my mum whilst I am receiving treatment etc. I know he will really struggle witnessing me getting poorly due to the radiotherapy etc. Due to all the difficulties he has already experienced; witnessing me getting unwell, having to be separated from myself whilst I was in hospital etc, plus the added stress of being away from home for so long, the very least he deserves is as much fun and distraction as possible. Some of the money raised will hopefully be able to pay for flights for family to come and see us whilst I receive treatment as being apart from them at such a difficult time will be extra tough on us all.

Here is a clickable link to the chordoma foundation website.

Chordoma Foundation

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Updates

4

  • Sarah18 days ago
    Sarah

    Sarah

    18 days ago
    Update from the Page owner

    ❤️🌈🙏🏻Thank you all so much! 78% of the way to target! That’s truly AMAZING! I’m feeling very lucky to have received such incredible support and kindness 🙏🏻🌈❤️

    Share this update to help us raise more

  • Sarah1 month ago
    Sarah

    Sarah

    1 month ago
    Update from the Page owner

    ❤️🌈🙏🏻❤️🌈🙏🏻❤️🌈🙏🏻❤️🌈🙏🏻🌈❤️🌈Absolutely amazing! Thank you to all those who have so generously donated. Thank from the bottoms of our hearts. ❤️🙏🏻🌈❤️🙏🏻🌈❤️🌈🙏🏻❤️🌈🙏🏻❤️🌈🙏🏻

    Share this update to help us raise more

  • Sarah1 month ago
    Sarah

    Sarah

    1 month ago

    ❤️🙏🏻❤️ WOW, WOW, WOW.....59% to first target in 24hrs...! I am continuing to be bowled over by your love, support and generosity. Just when I needed it I have begun to feel as though I can and will fight this. You have once again reminded me that there are good people in this world and that me and Isaac are not alone. Sending you all so much love.... please continue to share my story and raise awareness of Chordoma xxx ❤️🙏🏻❤️

    Share this update to help us raise more

1 month ago

Sarah started crowdfunding

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Page last updated on: 6/23/2018 9:55 AM

Supporters

289

  • Lynn

    Lynn

    Jun 23, 2018

    £20.00

  • Lynn

    Lynn

    Jun 22, 2018

    £10.00

  • Anonymous

    Anonymous

    Jun 20, 2018

  • Anonymous

    Anonymous

    Jun 20, 2018

  • Anonymous

    Anonymous

    Jun 18, 2018

    £10.00

  • Anonymous

    Anonymous

    Jun 16, 2018

    Good luck to you and your family. xx

  • Jennifer Steptoe

    Jennifer Steptoe

    Jun 7, 2018

    £105.00

About the fundraiser
Sarah

Sarah

Groombridge, Tunbridge Wells, UK

I am a solo mummy to the most beautiful boy in the world (ok, so I’m biased). I need revolutionary radiation treatment called Proton Beam Therapy - not yet available in the UK. Without this treatment my son & I face an uncertain future - I’m petrified. Thank for reading my story.

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