Late Term and Child Loss

Question about how to help (ticker warning)

Hi everyone. I have a "Facebook friend" from a college class that I don't know that well. His 2 month old baby boy was recently diagnosed with a fatal disease (SMA) and will most likely not survive the next year (the guess is 12-18 months). They have an older daughter who is about 2. My heart breaks for them every time I see one of their status updates about his condition and I feel like I need to do something for them but don't know where to even start.

 

I would love to be able to get them something to help ease some stress, but obviously in such a horrible situation there isn't much I can do that will help as much as I would like... I was thinking about maybe sending them gift cards to restaurants near the hospital, or a Netflix subscription, or finding a photographer to come take family photos of them. I don't know what would be something appropriate that they could actually use. If any of you have any ideas about what I could send them to help out even a tiny bit I would really appreciate it. 

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Re: Question about how to help (ticker warning)

  • I'm so sorry for your friend.I spent alot of time in the hospital with my daughter,and your suggestions are great!

    The things I enjoyed the most from friends when we were in the hospital with Adria were:

    *Gift cards for restaurants near the hospital,or even places like Dunkin Donuts and McDonalds,or order them food from dominos if there is one nearby.The cafeteria food gets old quick,so anything is a treat!

    *Practical items,such as laundry soap,quarters for laundry, toothpaste, deodorant,shower gel,etc is the last thing they'll think of,so it's nice when someone gets those things.

    *If you would like to get a subscription to some kind of TV or movie service,I would actually recommend a subscription to something like Hulu plus or an itunes gift card.I have a netflix subscription,but the instant didn't work on my laptop at the hospital because of the way the security settings for hospital internet access were set up.I had a friend who would buy me shows she knew I liked on itunes,and I enjoyed that alot.

    Hope that helps!

    Lilypie - (yNYF)

    Lilypie - (bSes)

    T1 diabetes diagnosed 11/95 due to severe pancreatic injury
    BFP 1 1/22/10 EDD 9/30/10 Adria b. 9/11/10 d.8/9/11, Transposition of the Great Arteries,
    Pleural effusion, Kidney Failure
    BFP 2 4/26/12 EDD 1/3/13 M/C 5/13/12
    BFP 3 10/3/12 EDD 6/17/13 Twins! Preston and Juliet b. 5/22/13

     

     

     

     

     

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  • I really love the photography idea! I have a friend who is a photographer and she came to the NICU to take pictures of Michael. Those pictures are some of my most treasured possessions.

    Also, gas and fast food gift cards were great. We live about 20 minutes from the hospital so I made 2 trips a day. Plus, I didn't really want to take the time to go sit at a restaurant, I wanted to be at the hospital with my little man. Fast food is what I lived on because it was fast.

    6/28/10: Lost our sweet baby Addyston at 18wk 1day to pPROM 7/24/11: Michael William born at 24wk 2d due to IC after an emergent cerclage at 18wks, 4wk home BR and 2 weeks hospital BR. Grow strong our little Miracle! 9/17/11: Michael joined his sister in heaven after 8 amazing weeks with us on earth. He fought a very hard fight but NEC was too much for him in the end. Lilypie Angel and Memorial tickers Lilypie Angel and Memorial tickers Lilypie Pregnancy tickers
  • I LOVE the idea of a photographer for family pictures.  My son died at 2 months old, and we didn't have any pictures of all 4 of us.  The first ones we got were ones that were taken in the hospital the last couple hours before Adam passed.  I wish I had more, but I'm so very grateful for all of those pictures. 

    My son had a very short hospital stay (2 days) before he passed, so I'm not much help otherwise.  I had an amazing friend that watched my daughter at the hospital when we were at the hospital.  I don't know what we would have done without her cuz my daughter wasn't allowed in my son's room until the very end.  I don't know if you could offer to help with you friend's other child, but that would be wonderful. 

    I'm so sorry to hear about your friend's child.  Please send my love and condolences.

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