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  • Cure SMA Care Package

    Posted by kelly-miller on December 18, 2018 at 1:11 pm

    Just wanted to encourage anyone who hasn’t yet applied for the Cure SMA care package to do so. I got mine  last week, and I am so excited to tell you about it! Here’s what was in it (this is from memory since I am home alone, so don’t hold me to all the contents):

    – 1 Echo Dot Plus: This is absolutely amazing! We are an Echo Dot family with one in our bedroom & one in my husband’s office. It makes life easier to be able to get a hold of him by using it as an intercom between us, as well as getting the weather, listening to music, playing games with Alexa, listening to podcasts, reordering things on Amazon, setting reminders, listening to audio books, hearing news, and making certain phone calls. But, this new Plus is the bomb! Not only will it do all of these things, but we put it in the living room where Alexa can change the TV channels for me and increase or decrease the volume, not to mention turning the TV on or off. This is the 1st time in over 20 years I’ve been able to pick & change to the channel I want to watch!

    – 1 beautifully soft sheepskin: I’m using this to lay on, and I’ve never been so comfortable in my life. This thing is amazingly soft, so much so that the dog is ready to fight me for it!

    – 3 electrical outlets with 2 remotes: These have helped my husband tremendously. I can’t push the buttons on the remotes, even though they are very easy, so he set it up where he can now turn our lamp (the bedroom one is across the room from the bed) off when he lays down in bed. No more stumbling in the dark and hitting his leg on the corner of the bed. He also put one behind the Christmas tree, so now there’s not any danger of turning the tree over as he turns the lights on (no more crawling under to plug-in the lights). He put the 3rd one on a lamp by the couch that stands behind an end table. He used to have to reach over the table and stretch to turn on the very tall floor lamp. Now he pushes a separate button for each outlet that he wants on. We have one remote in the bedroom and one remote in the living room where he can just go into the living room next to his office and push the remote button to turn the lamp on for me in the bedroom!

    – 1 Cure SMA bracelet: I was pretty excited to get this. Everyone has their rubber bracelets that speak about whatever cause is important to them. Finally, we have our own! Mine is purple with deep yellow letters. Purple happens to be my favorite color. And for once, the bracelet is small enough that it actually fits my tiny wrist! I’ve been sporting it ever since we opened the box.

    – 1 gel-type travel pillow: I wasn’t sure what I would do with this at 1st. Of course, I have uses for a small pillow, but I’ve never been a fan of gel because my body isn’t heavy enough to make any indention. The gel would always remain hard, causing even more pain than without a pillow. This one is made differently. I decided to use it to go under my lower back, really under my hip, to keep pressure off a sore I have on my tailbone. I watch TV at night from my bed, and I’ve been using a towel folded up to prop. This perfectly sized pillow fits nicely in the spot the towel has been going, and the gel is soft enough that my body does indent into it. This is the softest, most comfortable thing I’ve ever used (next to the sheepskin of course). I’ve also started using it under my arm when I sleep on my side. No more towel to constantly fold “just right” or lose when laundry day happens! This pillow has a very nice zippered case on it that will wash well and is soft in its own right.

    – 2 grabbers: These came in 1 cellophane package together. They are the metal ones that you squeeze a trigger to get the pinchers to pick up something for you off the floor. They can be used to reach for something on the table or countertop also. I can’t use this because, again, I don’t have use of my hands to squeeze the trigger, but we donated them to a friend who had a need. It was nice to be able to help them for a change!

    – 1 telescoping back-scratcher: This is the length of a pencil, has an end that looks like a rake (yes, like when you rake the leaves outside), is metal with a plastic handle, and it telescopes in and out. Of course, I can’t pick it up to use myself, but my husband has used it to scratch my back. It actually telescopes out about 1 1/2 feet, I think. Now he doesn’t have to bend over while I’m laying on the bed in order to scratch me. I don’t know about y’all, but I have constant back itching problems, and I’m happy for anything that makes it easier for him to scratch!

    I feel like I’m totally missing something to tell you about, but I just can’t remember what that is. If I think of it later, I will update this post with a new comment. My point here was to let you know that this is not some rinky-dink little care package they are sending out. I know Deann has done a video actually showing each of the contents, and someone else wrote on here about what was in it (I think it was Kevin). If you haven’t done so yet, don’t hesitate to apply for your package. If you take care of someone who has SMA, apply for them! I know I procrastinated because I was afraid it would be some sort of obligation to Cure SMA, or it was a gift for people who were new to the whole SMA world. Don’t worry about any of that. There is no obligation, and this package is for everyone who has or helps someone with SMA. I’m leaving the link here at the end of my post. I know this is a really long post, but I really wanted to encourage you if you don’t have yours yet because it was the previous posts about it that made me order mine!

    [email protected]

    kevin-schaefer replied 5 years, 5 months ago 6 Members · 11 Replies
  • 11 Replies
  • kevin-schaefer

    Member
    December 18, 2018 at 1:23 pm

    Thanks Kelly! Yep I’m really loving this care package as well. The sheepskin cloth is especially useful for me. I’ve been laying on it as well, and I’m sleeping better as a result. Thanks for sharing, and glad it’s helping you as well!

  • krystal

    Member
    December 18, 2018 at 1:26 pm

    That’s great to hear. It sounds awesome! I contacted the local chapter for CureSMA and they told me they will send a care package to my daughter.

  • deann-r

    Member
    December 18, 2018 at 7:12 pm

    Glad you got yours too. Pretty awesome items included. I know they ran short, so some are still waiting, but totally worth the wait.

  • krystal

    Member
    January 2, 2019 at 9:28 am

    My daughter received her care package a day or two after Christmas, and while I was ecstatic by the happiness my daughter was showing as I pulled out the toys one by one from the box, I was crying tears of joy on the inside. My husband and I couldn’t believe the abundance of toys and what made it even better were the little notes sent by CureSMA that mentioned how this toy or that toy could be helpful for children with SMA. My daughter is 13 months old, and the care package included:

    stack & count cups, a magnetic doodle pad, sketch pads, Twistables crayons, security blanket, hand-made quilt, medical fleece ease sheepskin, a white stuffed bear, ice gel teether keys, a snail balloon, soft stacking blocks that also came with soft balls, Sisu positioner pillow, toy mobile phone, an Octopus bath toy, a CureSMA mini flag, 2 CureSMA bracelets, wooden puzzle vehicle shape sorter (hope that makes sense!), Playfoam balls, a bubble wand, Walkie Chalk, Goodnight Moon mini board book, baby doll rattle, and more.

    The toys range in age from 0 months to 3 years. So there are toys here that, once she gets older, she will be able to get her hands on. We are very thankful for the organization!!

    Happy New Year!

    • kevin-schaefer

      Member
      January 2, 2019 at 10:34 am

      That’s great Kyrie! I’m so glad your daughter is enjoying the items in her care package. Cure SMA is great.

      I know you’re probably overwhelmed at this point, but have you and your husband talked about going to the Cure SMA conference this summer? It’s in Disneyland in late June through early July. I recommend anyone affected by SMA to go, but especially newly diagnosed families. Feel free to ask me any questions about it.

      • krystal

        Member
        January 3, 2019 at 11:31 am

        I would love to go, but it just depends on a lot of things, such as finances and the health of my family. I was even considering going to the conference on my own, depending on the circumstances, to network and learn. Do you think I would still  benefit from going to the conference with just me and my daughter?

      • kevin-schaefer

        Member
        January 3, 2019 at 12:46 pm

        Totally understand. There are always logistics to consider.

        I absolutely think you could benefit from going, even if it was just you, you and your daughter, you and your husband, etc. I also know a lot of families with younger kids who bring a grandparent or other family member to help them out. But yes, you’ll learn a ton and be able to connect with a larger SMA community.

      • deann-r

        Member
        January 3, 2019 at 2:40 pm

        Regarding the Cure SMA conference, have you checked with Cure SMA? I know you can apply for scholarships to attend. I’m not sure on deadlines and such, but it might be worth checking into. If not for this year, maybe in an upcoming year. I’ve never attended, but have heard the conferences are pretty great.

      • kevin-schaefer

        Member
        January 3, 2019 at 2:52 pm

        Thanks for bringing that up. I always apply for a scholarship.

  • ryan-berhar-2

    Member
    January 2, 2019 at 5:41 pm

    I’m still waiting for mine.

  • adnan-hafizovic

    Member
    January 3, 2019 at 10:03 am

    Kelly i have suggestion to you.I think you are married and for me it would be good to write little about your marriage,you know how you met your husband and others.

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