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Closed 19/01/2018

0%
£1,010
raised of £1,000 target by 40 supporters

    Weʼve raised £1,010 to Help The Family Through This Difficult Time . Todays Pain is Tomorrows strength 💙

    Manchester, United Kingdom
    Funded on Friday, 19th January 2018

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    Story

    Jake is just 3 years old. When he was 4 months old , he was diagnosed with a very rare genetic mutation called X-Linked Hyper IgM. Jake's condition means he has no working immune system and is at constant high risk , of infection.

    Case studies have shown that this condition without a transplant has a life expectancy of under 25yrs.So a bone marrow transplant is currently the only cure.

    If you were to meet Jake, you wouldn't think there was anything wrong with him, you would probably notice his walking is off a little and he has squints in both eyes, he's eating like a horse because of the steroids, laughing and playing and is being so very brave.

    But we need to watch him like a hawk, and all his drinks need to be boiled. He cannot go back to nursery, cannot play with other kids, go swimming, visit a farm or do the things most kids his age do.

    He thinks the MRI scanner is a doughnut machine. He thinks he has dirty bugs in his head. He thinks the line in his chest are wiggly worms.

    He doesn't fully understand why he cannot go back to nursery with his friends, he just says... I don't want my friends to get my dirty bugs :(

    Jake also has CTPS 1. (CTP synthase type 1), this means his body doesn't have T cells to fight off infections. His cells are dividing and multiplying 100 times over than they should be doing , they are working overtime and bouncing out of control.

    One morning a few weeks ago, Jake woke up, got out of bed, and fell over. We thought nothing of it. He then started falling over quite a lot and toddling instead of walking. We took him to the doctors who sent us to the hospital.

    There was concern at the hospital about his mobility and why to he was struggling to walk all of a sudden and his eyes had got worse, so they did a MRI scan, and took bloods.

    MRI scan revealed three lesions ( tumors ) on his brain, two at the back of his head, and one huge one in his forehead. They said he had picked up the EBV virus which he couldn't fight off because of his IgM and this virus had attacked his brain.

    Jake had emergency brain surgery to release the pressure of the tumors on his brain, followed by a 2nd surgery to fit a chest line to administer drugs through and leave in ready for his transplant.

    Jake is now being given Rhituximab Cancer Treating steroids in an attempt to get rid of the virus which will also hopefully kill the tumors. He has also had his first batch of donated TCells.

    Jake is now waiting to have a bone marrow transplant at Manchester Royal Children's hospital. In the meantime he will continue his treatments and it means endless trips to the hospital every week.

    The

    I have set up this fund to ease the worry of finances for mummy and daddy , Mummy cannot go back to work now, as she is Jake's full time carer, and with only one low wage coming in, things are already hard enough for them, and with a little help and support, it will make life a little easier.

    I know times are hard for everyone and we really do appreciate anything you can give. So please, give what you can no matter how small. Thank you Angela ( Jake's Nan )

    Updates

    6

    • Angela - Jake's Nan Nan 6 years ago
      Angela - Jake's Nan Nan

      Angela - Jake's Nan Nan

      6 years ago

      Jake has just had a week of daily intense chemotherapy and a bone marrow transplant to hopefully build a new immune system. Its too early to say if the bmt has worked. Ebv is still present in his blood but MRI scan shows that the tumors in his brain are slightly better. He is very weak and needs physio to help him walk again. Mummy lives in Jakes hospital room and daddy works hard for them and visits as much as he can. Jake will be in hospital at christmas and possibly his 4th bday on January 2nd, but still smiling and he is so strong.

      Update from the Page owner

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    • Angela - Jake's Nan Nan 6 years ago
      Angela - Jake's Nan Nan

      Angela - Jake's Nan Nan

      6 years ago

      Jake has just finished daily intense chemotherapy and has had a bone marrow transplant to hoepfully build a new immune system.It is yet to early to say if it has worked. The brain tumors remain and ebv is still in his blood. But latest mri shows slightly better. Jake will stay in hospital for the forseeable and be in for christmas and maybe his 4th bday on 2nd Jan 18. He is STILL smiling and so very brave.Daddys working hard and visits as often as possible and mummy never leaves Jakes side xxx

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    • Angela - Jake's Nan Nan 6 years ago
      Angela - Jake's Nan Nan

      Angela - Jake's Nan Nan

      6 years ago

      Update from the Page owner

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    7 years ago

    Angela - Jake's Nan Nan started crowdfunding

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    Page last updated on: 12/19/2017 00.19

    Supporters

    40

    • Anonymous

      Anonymous

      Dec 19, 2017

    • Catherine Dillon

      Catherine Dillon

      Dec 13, 2017

      Get well soon wee man 💙 Xx

      £20.00

    • Cupcakecaro1 & tutnut2505

      Cupcakecaro1 & tutnut2505

      Dec 11, 2017

      Merry ChristmasFrom 2 lucky ladies Xxxxxxxxx

      £100.00

    • Jane Holland

      Jane Holland

      Dec 11, 2017

      Hi twink hope this helps love giorgio520

      £100.00

    • Vicky Charalambous

      Vicky Charalambous

      Dec 9, 2017

      You beautiful brave boy x keep fighting and getting stronger for nanny x lots of love little man x

      £10.00

    • Carol Downes

      Carol Downes

      Dec 9, 2017

      Sorry its not much but hope it helps xxxxxxx

      £20.00

    • Fiona Mctaggart

      Fiona Mctaggart

      Dec 3, 2017

      Keep going love to you all xx

      £10.00

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    Angela - Jake's Nan Nan

    Angela - Jake's Nan Nan

    Manchester, United Kingdom

    Jake has now had intensive chemotherapy and a transplant. He will be in hospital now up to 8 weeks maybe less maybe longer. We have to wait to see if the transplant has engrafted. He is off his food at the minute and going through all the horrible side effects of chemo.x

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