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Closed 04/02/2018

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£1,909
raised of £2,000 target by 90 supporters

    Weʼve raised £1,909 to Help support 1 of our little Rainbow Girls in Pwllheli who has just been diagnosed with a Brain Tumor and blindness in 1 eye

    Pwllheli, United Kingdom
    Funded on Sunday, 4th February 2018

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    Story

    Please help us to raise some funds for 1 of our little girls who attends Pwllheli Rainbows . 3 weeks ago during a routine eye test Evie's parents were shocked to be told by the optician that she was blind in 1 eye , at first it was thought that it could of been caused from a virus but the results from the hospital has shocked the family, unfortunately little Evie aged 6 has a Brain Tumor , this is what has caused her eye sight loss. Evie is one of the most happiest , politest , quietest children I have the pleasure of co leading in Rainbows, she lives with her brother and parents in Morfa Nefyn. We look forward to seeing all the little Rainbows every week and when 1 is missing it really is felt throughout the group. Evie has now had her 1st operation and possibly more will follow shortly depending on recent scan results.. She is currently in Alder Hey Hospital awaiting to be allowed home to recover before going back in a few weeks for more tests and further procedures. Evie will need Proton therapy outside of the country in the coming months in Florida, this gives Evie the best possible results. Please help us to raise as much money as we can to help make this whole process less financially stressful....we all wish I am sure there was something we could do to take away this condition from little Evie but that lays in the hands of the surgeons etc. Please donate to help make the next few months not be a financial worry on the family, Travelling to America as you can imagine is going to cost thousands. There are so many fundraising events happening over the next few weeks in the run up to Christmas details will be posted below and on Evies fundraising Facebook page. One brave person is shaving all there hair off to raise funds. My daughters school Ysgol Bro Plenydd, Y Ffor will be donating there school harvest Festival collection to the fund. There is so many other things happening to raise funds. Our self's at Rainbows are holding a fundraising child's tombola stall on the 25 & 26 Th November as part of Hwyl Yr Wyl Pwllheli. ....Get well soon

    Evie Update on Evie’s Progress.

    This last month has been a blessing to be home and get back to our new “normal” while Evie had her respite, she went straight back to school (she was adamant that she wanted to go and see her friends and teachers, all of which have been brilliant with her) and has got on with her life as though nothing was wrong. She is a bit reserved in certain activities as she is scared of hitting her head but with all things considered she has been amazing and gives us strength with her strength.

    Early this month Evie had a follow up MRI to check if her catheter was in the correct place and to check that the Cysts were 1st sealed and 2ndly that it was just the 1 cyst and not several, all of this was done with the hope that we were starting her on her Chemo the second week of this month, however, this was not meant to be. Her MRI was showing that the catheter was not lying in the correct place and the ommaya reservoir to access her catheter was blocked meaning that she definitely needed another surgery, we were not sure if this meant having to re-do the failed previous surgery or to go and have the “big operation”. So for the last 2 weeks we have been in limbo and going through the torture of trying to decide which option would be best for her.

    We were called back yesterday to see her Neurology consultant who said that the only option she had was to have the big operation. This means they will need to take out the catheter and reservoir left then they make a bigger incision to open up her skull and they will take out as much of the tumour and cyst as they can but due to the complexity and irregularity in the shape of the cyst it is attached to crucial areas of her brain such as the pitruity gland, hypothalamus and some crucial arteries that they cannot take out all of her tumour and cysts. This will then need to be targeted by the proton radiotherapy in Florida to remove the remainders of the tissue.

    So we are having to take her back on the 12th December and as this will be a hospital stay of 3-4 weeks minimum we will be spending xmas in Alder Hey (which we are gutted about), but as Evie said a few days ago “she doesn’t mind if she’s in hospital for xmas or if she has any presents as long as they can make her better”; So Luke will come and join us when school breaks up for the Christmas holidays and we can make the best of our situation to celebrate our Christmas in Alder Hey this year. We are told that we will be sent out to Florida at the end of January/February and we will be there we are told now around 6-8 weeks providing Evie doesn’t fall ill, (which she shouldn’t) We have however been told that we might have to find the money to pay to bring her brother with us to Florida (which we are worried how we will fund this but we hope that we can negotiate on this as we cannot see how they can expect a 10year old child to be separated from both parents for potentially 8 weeks with no physical contact)

    We have been given some even more disappointing news regarding her condition, that despite all the procedures she will have to go through in the coming months, that this type of tumour (Craniopharyngioma) that this will continue to grow and she will need to go through vigorous checkups, and when this does start to grow again that she will need to go through all of this again many times in her lifetime. Evie is not aware of this and we ask you please to refrain from mentioning this in front of Evie or her brother, as far as they are concerned Evie has been told that as she is a rare case (which she is) that they need to take lots of pictures of her brain to see how it behaves after her operation and when the time comes that this is growing significantly again we will have to rethink how we break this news to her, but we feel as her parents, Evie as a 6 year old does NOT need to know and worry about this and hope that you can all appreciate and respect this.

    We appreciate all the fundraising and efforts everyone has been going to over the last few months, it really does make us appreciate living in our little communities compared to the city life how everyone comes together to help and support us, we will never be able to thank you all enough and Thank You doesn’t seem like the best choice of words but it truly if heart felt. We still have various events upcoming in the next few months from an Elvis impersonator concert at the Golf in Pwllheli on the 2nd February, to Tudur Wynn and Y tri Digri on the 10th February, we are organising a few Psychic Nights, and various other artists and bands have offered to help us that we are trying to organise the dates for so please keep an eye on our events calendar and spread the word. The Just Giving page that Evie’s rainbows group did is still running https://www.justgiving.com/crowdfunding/angela-jenkinson? And we have opened another one locally which is https://www.justgiving.com/crowdfunding/EviesFamily please add as many of your Facebook friends to any of the just giving pages and to this page; if we raise awareness to another family who could save permanent lifelong debilitating conditions then this page will have served its purpose Craniopharyngioma’s are such a rare and complex tumours that we certainly never heard of it before and we want to spread the word to teach others about it and hopefully one day medical science will have advanced enough to find a way of stopping the re-occurrences of this horrible silent tumour.

    Myself, Geraint and our family are so grateful to everyone for their kindness, generosity and help over the last few months. xxx

    Updates

    14

    • angela jenkinson6 years ago
      angela jenkinson

      angela jenkinson

      6 years ago
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    • angela jenkinson6 years ago
      angela jenkinson

      angela jenkinson

      6 years ago
      Update from the Page owner

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    • angela jenkinson7 years ago
      angela jenkinson

      angela jenkinson

      7 years ago
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    7 years ago

    angela jenkinson started crowdfunding

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    Page last updated on: 6/28/2018 09.14

    Supporters

    90

    • Judith Hughes

      Judith Hughes

      Jan 20, 2018

      Casglwyd £100 yn casgliad Gwasanaeth Nadolig Capel Rehoborth yn Harlech. Pob lwc i Evie gyda'i thriniaeth.

      £100.00

    • Sion Peters-Flynn

      Sion Peters-Flynn

      Jan 14, 2018

      £10.00

    • Amanda Brady

      Amanda Brady

      Dec 15, 2017

      xxx

      £10.00

    • Neal Morris Caprice

      Neal Morris Caprice

      Nov 15, 2017

      We wish Evie all the very best

      £25.00

    • Marcela Atkinson

      Marcela Atkinson

      Oct 30, 2017

      You're so sweet! 💓God bless you and get well soon praying for you . 💓🙏🏼😘💕

      £30.00

    • chris mchugh

      chris mchugh

      Oct 30, 2017

      £50.00

    • Barbara Carr

      Barbara Carr

      Oct 29, 2017

      Wishing you and your precious family a perfect and fun future...happy thoughts.

      £100.00

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    About the fundraiser
    angela jenkinson

    angela jenkinson

    Pwllheli, United Kingdom

    I am a Rainbow helper at Pwllheli Rainbows and little Evie attends our group every week

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