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Trisha Barker

Trisha Barker is crowdfunding

82%
£6,185
raised of £7,500 target by 184 supporters

Weʼre raising £7,500 to Give Nellie an amazing life and make some incredible memories

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Story

Nellie is my grandaughter and she has just recently been diagnosed with an extremely rare genetic condition called Krabbe Disease.

Her mam, dad and big brother George have been so brave so far, they have been fundraising for Krabbe UK and have raised over £1000 so far, but what I hope here is that we can ease the strain on Olivia and Joe, so they can fully enjoy the little time they have with Nellie. Below is Liv & Joes story of the last few months, please have a read...

So while covid has been going on we have been living our own little nightmare. Nellie was took in to hospital by Joe at the start of April following a seizure and stayed in for 3 weeks. Due to covid we were not allowed to swap or both be there at the same time meaning 3 weeks without seeing my baby. After undergoing numerous testing (including CT scans, MRIs, EEGs, lumbar puncture, blood and urine and genetic testing) it turns out she has a very rare condition...Krabbe disease.

Krabbe disease is a genetic condition which affects roughly 1 in every 100,000 individuals. A baby will develop normally for the first few months of their life and start to show symptoms after (for us this was feeding difficulties and poor head control). This awful condition causes infants to decline and they rarely survive until the age of 2. For every child me and joe have theres is a 1 in 4 chance that they could have this.

We have been struggling to come to terms with the new Nellie, the Nellie that Joe brought home from the hospital was not what we was used to. She doesn’t wake up very much now and we haven’t seen her gorgeous smile or her little giggle since the day she went into hospital. She is now fed through a tube and has to be suctioned as she can’t clear her secretions and has an unsafe swallow. We’re drawing up so many medicines daily and we have slowly adjusted to our new routine. We will never forget the happy little princess we had before this condition took over. It’s hard to grieve for a child you still have, we already feel like we’ve lost a massive part of our little girl. However she is still our amazing, gorgeous baby, our little fighter and we will do anything we can to make sure she is loved, cared for and comfortable.

We are embracing Nellie now for who she is and the time we have left with her. The support from our family and friends has been amazing even though most of them can’t see us properly at the moment. We’ve also found great comfort in talking to other parents in the same situation as us who we were put in touch with through the charity Krabbe UK. There are currently only 8 children at this moment in time with this condition, Nellie being one of them.

Our goal now is to raise awareness and to help others who are currently in the same or similar positions. Krabbe disease is not routinely screened for here in the UK, in the USA there are only a few states that actively screen. This needs to change, and the more we speak about it, the more aware people are then hopefully this will happen in the future because no parent should have to go through something like this, but until then if they do, we’re here...and Krabbe UK is here, and the other amazing parents who have helped us are here to.

Whilst I appreciate that times are hard for everyone at the moment, please if you are able to, make a donation to ease the extra burden that this young family face, purchase specialist & sensory equipment and also allow them to make amazing memories with Nellie, make her as comfortable as possible, and enjoy the precious little time they have, thank you.

You can follow Nellies journey here if you would like 🙂

https://www.facebook.com/Nellies-Journey-111399907256819/

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Updates

4

  • Trisha Barker11 months ago
    Trisha Barker

    Trisha Barker

    11 months ago
    Update from the Page owner

    Share this update to help us raise more

  • Trisha Barker1 year ago
    Trisha Barker

    Trisha Barker

    1 year ago
    Update from the Page owner

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  • Trisha Barker1 year ago
    Trisha Barker

    Trisha Barker

    1 year ago
    Update from the Page owner

    Thank you so much for all your help so far! It is overwhelming the support and generosity we are seeing.

    Share this update to help us raise more

1 year ago

Trisha Barker started crowdfunding

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Page last updated on: 2/19/2021 09.25

Supporters

184

  • Liv Anderson

    Liv Anderson

    Feb 19, 2021

    I'm so glad i got the opportunity to raise money for this little angel. Rest in Peace Nellie.

    £100.00

  • tabitha

    tabitha

    Nov 29, 2020

    thinking of you all ❤

    £10.00

  • Anonymous

    Anonymous

    Nov 18, 2020

    Heartfelt wishes in your quest for the best of outcomes.

    £50.00

  • Fiona Smith

    Fiona Smith

    Nov 13, 2020

    Sending a lot of love and well wishes to all of the family 🤍

    £20.00

  • Clare yeomans ❤️❤️❤️

    Clare yeomans ❤️❤️❤️

    Nov 8, 2020

    £10.00

  • Anonymous

    Anonymous

    Nov 7, 2020

    £10.00

  • Anonymous

    Anonymous

    Oct 28, 2020

    £5.00

Trisha Barker

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About the fundraiser
Trisha Barker

Trisha Barker

Sunderland

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