A. Liz Adventures / Smidge of This

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A. Liz Adventures / Smidge of This

Postby *K » Sun Aug 05, 2018 11:32 pm

I know that some of you probably followed along with April a while ago. Her recent post is heartbreaking. My husband and I lost our very best friend to a subset of the same disease and his only brother also passed away from the same thing. April didn’t share it but a go fund me has been set up: https://www.gofundme.com/charlotte-robson.
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Re: A. Liz Adventures / Smidge of This

Postby durbaa » Mon Aug 06, 2018 7:38 am

*K wrote:I know that some of you probably followed along with April a while ago. Her recent post is heartbreaking. My husband and I lost our very best friend to a subset of the same disease and his only brother also passed away from the same thing. April didn’t share it but a go fund me has been set up: https://www.gofundme.com/charlotte-robson.


I saw this too, I just can't imagine. I really haven't read much on the disease, so is this something that she has to be worried that her other kids have?
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Re: A. Liz Adventures / Smidge of This

Postby *K » Mon Aug 06, 2018 8:33 am

durbaa wrote:
*K wrote:I know that some of you probably followed along with April a while ago. Her recent post is heartbreaking. My husband and I lost our very best friend to a subset of the same disease and his only brother also passed away from the same thing. April didn’t share it but a go fund me has been set up: https://www.gofundme.com/charlotte-robson.


I saw this too, I just can't imagine. I really haven't read much on the disease, so is this something that she has to be worried that her other kids have?


Yes, it's genetic. She posted on instagram stories last night and asked for prayers for Camille and Lochlan as they need to get tested and have a 25% chance of also having the disease. In my friend's case, he took medicine from the time his brother was diagnosed (he was around 7) but he didn't have any symptoms until more than 10 years later. I don't think she shared which specific luekodystrophy that she has but I think it tends to be worse/more aggressive, the younger a person is when diagnosed.

She also said that Charlotte is getting a feeding tube on Thursday so I am guessing she has already started having trouble eating. I thought it looked like Charlotte was struggling with more than just walking in the past few months but not that long ago it seemed like April really still just thought it was a physical development type of issue. I wonder if something happened this past weekend.
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Re: A. Liz Adventures / Smidge of This

Postby durbaa » Mon Aug 06, 2018 8:43 am

*K wrote:
durbaa wrote:
*K wrote:I know that some of you probably followed along with April a while ago. Her recent post is heartbreaking. My husband and I lost our very best friend to a subset of the same disease and his only brother also passed away from the same thing. April didn’t share it but a go fund me has been set up: https://www.gofundme.com/charlotte-robson.


I saw this too, I just can't imagine. I really haven't read much on the disease, so is this something that she has to be worried that her other kids have?


Yes, it's genetic. She posted on instagram stories last night and asked for prayers for Camille and Lochlan as they need to get tested and have a 25% chance of also having the disease. In my friend's case, he took medicine from the time his brother was diagnosed (he was around 7) but he didn't have any symptoms until more than 10 years later. I don't think she shared which specific luekodystrophy that she has but I think it tends to be worse/more aggressive, the younger a person is when diagnosed.

She also said that Charlotte is getting a feeding tube on Thursday so I am guessing she has already started having trouble eating. I thought it looked like Charlotte was struggling with more than just walking in the past few months but not that long ago it seemed like April really still just thought it was a physical development type of issue. I wonder if something happened this past weekend.


Ugh so incredibly heartbreaking. :cry:
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Re: A. Liz Adventures / Smidge of This

Postby jennelled » Mon Aug 06, 2018 11:03 am

Y'all, I can't even. I've followed April's blog forever, and she's local to me. I've purchased several bows from her, including the ones my girls are wearing in my profile pictures. I pick them up from her house for crying out loud! Our whole local mom community is just devastated. I can't imagine what she's going through right now.
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Re: A. Liz Adventures / Smidge of This

Postby *K » Mon Aug 06, 2018 12:48 pm

jennelled wrote:Y'all, I can't even. I've followed April's blog forever, and she's local to me. I've purchased several bows from her, including the ones my girls are wearing in my profile pictures. I pick them up from her house for crying out loud! Our whole local mom community is just devastated. I can't imagine what she's going through right now.


I was wondering if you had met her.
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Re: A. Liz Adventures / Smidge of This

Postby jennelled » Mon Aug 06, 2018 1:20 pm

If anyone is interested in helping, there are a lot of local maker moms that are donating proceeds to the family. I'll include some here that can be shipped.

The Wooden Fox - "Be Still" signs (Tracey and her hubs are awesome - they made Matt a Mizzou cornhole set this past Christmas.)
A Little Stitch of Charlotte - donating 50% of proceeds from football-themed purchases in August
Lizzy's Crayon Box - donating 50% of notecard sales (she's a third grade teacher at Audrey's school!)
Beam Potty Training - 50% of August proceeds for potty training plans
PolkaDodds - 20% of all sales (she does my Lilly monograms for Yetis, and she did teacher gifts for me this year, too!)
Scout & Cellar - 40% of wine sales!

Those are the biggies for non-local folks. There are sooo many more - art classes, photography sessions, seashell bags, lots of MLM products, cake pops, car washes, bootcamps... We're loving on the Robson family SO HARD.
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Re: A. Liz Adventures / Smidge of This

Postby Beth&Bobby5308 » Thu Aug 09, 2018 6:54 am

So sad. Our neighbors grandson has the same thing, he was diagnosed about 2 years ago. He's now walking and doing more and more, but it's sad to know what lies in front of them. Prayers for this family as they just begin to navigate thru this.
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Re: A. Liz Adventures / Smidge of This

Postby jennelled » Thu Aug 09, 2018 11:07 am

We're getting updates - apparently anesthesia can accelerate the disease, and she's been under twice. :( Doctors have described her condition as "rapid decline," so I don't think that this will be a years-long ordeal; they're very focused on making her comfortable and loving on her in their home. Her feeding tube is being replaced today with a g-tube for easier feedings.
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Re: A. Liz Adventures / Smidge of This

Postby Jacoby2Seelen » Fri Aug 10, 2018 9:47 am

I don't know this person, but this is heartbreaking. I can't fathom. :( :( :(
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Re: A. Liz Adventures / Smidge of This

Postby jennelled » Fri Aug 10, 2018 12:45 pm

She started an IG - @charlottesjoy. It's hard to read and watch - I almost cried at my desk this morning.
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Re: A. Liz Adventures / Smidge of This

Postby durbaa » Fri Aug 10, 2018 12:56 pm

jennelled wrote:She started an IG - @charlottesjoy. It's hard to read and watch - I almost cried at my desk this morning.


I saw one of her captions and totally cried at my desk and closed out the rest. I just can't imagine. Do you know when they find out about the other kids?

Also, I saw where this link https://www.facebook.com/potsandplans/ has a digital book of 5 weeks of meal plans, grocery lists and prep tips for $15, the proceeds going to this family.
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Re: A. Liz Adventures / Smidge of This

Postby jennelled » Fri Aug 10, 2018 1:44 pm

durbaa wrote:
jennelled wrote:She started an IG - @charlottesjoy. It's hard to read and watch - I almost cried at my desk this morning.


I saw one of her captions and totally cried at my desk and closed out the rest. I just can't imagine. Do you know when they find out about the other kids?

Also, I saw where this link https://www.facebook.com/potsandplans/ has a digital book of 5 weeks of meal plans, grocery lists and prep tips for $15, the proceeds going to this family.

Within a week, as far as I know - and that was a day or two ago.
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Re: A. Liz Adventures / Smidge of This

Postby durbaa » Mon Aug 13, 2018 7:35 am

jennelled wrote:
durbaa wrote:
jennelled wrote:She started an IG - @charlottesjoy. It's hard to read and watch - I almost cried at my desk this morning.


I saw one of her captions and totally cried at my desk and closed out the rest. I just can't imagine. Do you know when they find out about the other kids?

Also, I saw where this link https://www.facebook.com/potsandplans/ has a digital book of 5 weeks of meal plans, grocery lists and prep tips for $15, the proceeds going to this family.

Within a week, as far as I know - and that was a day or two ago.


Just saw her other kid's don't have it, thank God.
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Re: A. Liz Adventures / Smidge of This

Postby *K » Tue Aug 14, 2018 11:51 pm

When she posted a picture/video of Charlotte the first time after announcing this terrible news, it took me a bit off guard. She's so little and I hope that she doesn't fully realize what is going on but I think I was getting a little caught up in what this might be like for April and stopped thinking about how they do actually have a little girl that is still interested in Elmo and her new baby brother. I just cannot stop thinking about them and am so happy that we get to see sweet Charlotte some now too.
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Re: A. Liz Adventures / Smidge of This

Postby jennelled » Wed Aug 15, 2018 6:50 am

*K wrote:When she posted a picture/video of Charlotte the first time after announcing this terrible news, it took me a bit off guard. She's so little and I hope that she doesn't fully realize what is going on but I think I was getting a little caught up in what this might be like for April and stopped thinking about how they do actually have a little girl that is still interested in Elmo and her new baby brother. I just cannot stop thinking about them and am so happy that we get to see sweet Charlotte some now too.

It must be so scary for Charlotte, to not understand what's happening. I also empathize with Camille - as the older sister to a sibling that underwent some pretty tough medical stuff (and we thought she might not make it), there's a lot to deal with for her, too.

April has some great people around her, and I feel confident that her family is getting the support it needs. Emotionally, though, I don't think there's ever enough.
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Re: A. Liz Adventures / Smidge of This

Postby durbaa » Wed Aug 15, 2018 7:39 am

jennelled wrote:
*K wrote:When she posted a picture/video of Charlotte the first time after announcing this terrible news, it took me a bit off guard. She's so little and I hope that she doesn't fully realize what is going on but I think I was getting a little caught up in what this might be like for April and stopped thinking about how they do actually have a little girl that is still interested in Elmo and her new baby brother. I just cannot stop thinking about them and am so happy that we get to see sweet Charlotte some now too.

It must be so scary for Charlotte, to not understand what's happening. I also empathize with Camille - as the older sister to a sibling that underwent some pretty tough medical stuff (and we thought she might not make it), there's a lot to deal with for her, too.

April has some great people around her, and I feel confident that her family is getting the support it needs. Emotionally, though, I don't think there's ever enough.


I saw the post where she said she had to tell Camille. I cannot imagine that conversation and Camille's sweet response just hurts the heart that any child has to deal with that. I feel so terrible what this whole family is going through and wish there was something I could do.
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