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Need some advice

mickeyr1087mickeyr1087 Member Posts: 8 Listener
edited August 2 in Parents and carers
Hi I'm new here. My child suffered badly on his feet with EB and other part of his body. It's a struggle and heartbreaking.

Replies

  • chiariedschiarieds Community champion Posts: 2,955 Disability Gamechanger
    edited June 23
    Hi @mickeyr1087 - Welcome to the community. I'm sorry to read that your child has EB. I know it's a most distressing disorder as I knew a young man with this a long time ago who raised money for those with his disorder. Does your child normally see a good specialist, & is your GP supportive?
    Have you come across DEBRA, as they also offer help? Please see: https://www.debra.org.uk/
    I'm pleased you've joined, as most of us here have varying disorders, or have an affected relative. Please do use this forum any time, as we do try to support each other as much as we can. Just say if there's any way we can help you, & just chat here too. :)

  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
    Thank u so much. I have never been a part of a community like this. He also has a heart condition the Dr said at age 6 or 7 he may go thru to correct the electrical circuit in his heart. I can't even tell u how stressful...I started a gofund me page today but i don't have Facebook and I don't know how to spend it. Reddit would even let me shark the link. Any advice on where to get it out there?
  • steve51steve51 Community champion Posts: 6,982 Disability Gamechanger
    Hi @mickeyr1087

    Good Morning & Welcome it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    Please please let me know if there’s anything that I can do 
    to get in & around.

    I have also got a rare brain 🧠 condition.

    @steve51
  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
    I'm so sorry to hear that Steve. We all have so much going on its its  to think of others. And I wish u well!!  I do have a question tho, do u know anyways to get the word out for a GoFundMe page or my supportful link? I don't have Facebook so that makes it hard to accomplish. Of u don't it's ok, I'm just desperate and feel kinda like I have no outlets. Anyways enjoy ur day! :)
  • janer1967janer1967 Community champion Posts: 2,161 Disability Gamechanger
    Hi and welcome to the community good to have you on board and I am sorry  about the stress and your sons condition.

    Is there any reason why you don't have FB could it be possible to sert an account up just to advertise your gofund page you could always delate it at a later time. I don't know of anywhere else that woujld get the same volume of viewers
  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
    True I thought of that. I guess it's worth a try, my husband and I have had problems with it and deleted our accounts for fb for peace. Lol if I do fb do u suggest any specific places to post it? Like just random groups. I figure anywhere would be good even if the group isn't nearby..right?
  • janer1967janer1967 Community champion Posts: 2,161 Disability Gamechanger
    I would suggest you post it on groups more local to you with cover story and link to page.  Also people ask for donations instead of birthday gifts etc 
    But you are right you could post in groups further afield 
  • steve51steve51 Community champion Posts: 6,982 Disability Gamechanger
    Hi @mickeyr1087

    Sorry for the delay how are things going with you today?????

    Do you still need any help/advice????

    Please please let me know if you need any further help/info????

    @steve51
  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
    Any help helps. I contacted some places and made an Instagram page for him but idk really what ppl to follow besides the obvious hashtag groups for what he has going on...
  • steve51steve51 Community champion Posts: 6,982 Disability Gamechanger
    Hi @mickeyr1087

    No problems do you want me to look into “GoFundMe”

    Please let me know how you feel?????

    @steve51


  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
    I made a gofundme for him. Hopefully it reaches out even tho I barely have social media. I have someone trying to help for the social media part for me.bit thank u for the offer to look into it. I just don't know how to get it out there without social media and stuff
  • steve51steve51 Community champion Posts: 6,982 Disability Gamechanger
    Hi @mickeyr1087

    Yes I would be more than happy in looking into things if required.

    Please please let me know if you are happy in me looking into “Go Fund Me”

    @steve51
  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
    edited July 13
    Thank u so much for ur help and compassion! I made a GoFundMe for him. Feel free to pass it on!!    [removed by moderator]
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,457 Scope community team
    Hi @mickeyr1087, really sorry your son has been through this. Unfortunately we do not allow GoFundMe links on the community. However, please do let us know how you get on and if there is anything else we can do. :)
    Community Partner
    Scope
  • mickeyr1087mickeyr1087 Member Posts: 8 Listener
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