Ignorance

This morning, I woke up to find messages from a Facebook friend alerting me to a photo that was posted on a page that went viral. It was a baby with Harlequin Ichthyosis, with the caption “1 like = get well soon” and at the time I am posting this, it had more than one million likes and almost 21,000 comments.

My friend thought it was Brenna and was extremely upset by it. Thank God it wasn’t Brenna’s photo…but it could have been. Most Harlequin babies look very similar at birth, and a number of other people also thought it was Brenna’s photo, as evidenced by some of the comments, who were pointing people to Brenna’s Facebook page. The photo was actually taken from the Harlequin page of FIRST’s website (Foundation for Ichthyosis and Related Skin Types), and I’m still not sure who exactly the photo is of, but that doesn’t matter.

The comments are unbearable to read, but it is proof that so much ignorance is out there when it comes to rare diseases and rare conditions…and difference in general.

I’ve dealt firsthand with ignorant people making cruel comments about Brenna’s photo, and those comments were nothing compared to what people are saying about this child’s picture. It’s sickening not only that someone would post this photo – without permission obviously – with no motive to educate about the disease itself but rather only to gain attention….but also that people would feel the need to write hateful and cruel comments about a baby who is sick and suffering.

I’ve seen this done with many other photos prior to this one, and I cringe every time I see negative comments … we need to remember that these are real people. These are real babies, real children, who have parents and family and friends who love them very much. It is absolutely deplorable that the photos of these precious children are being misused and exploited.

I was very proud of DeDe‘s response to the situation. She created her own photo with her son Evan’s pictures in order to combat the ignorance, to educate. (She was very angry as she was making it, hence some little errors…)

Brenna is my daughter, and I am proud of her. I think she is beautiful, and I am proud of her baby photos, and I should be able to share them just as any mother shares photos on social media of her baby without having to worry about someone using them inappropriately for the shock value. My child was created by God just as she is, and we love her very much.
Social media outlets can be a fantastic platform to share news, connect with friends, and much more. Because of Facebook and blogging, so many more people have learned about ichthyosis, and we greatly appreciate that sharing Brenna’s story has led to awareness and acceptance. But it can be very negative when information or images are used inappropriately like this. How can we combat this? Education. Educate yourself. Educate others.
Liking a photo on Facebook does nothing. If you want to truly help a child with a rare disease or cancer or a mental illness, do something. Learn more about it, educate others and donate to a cause (like FIRST, which helps families affected by ichthyosis, raises awareness and funds research for children like Brenna.) While they may just show up in your newsfeed on Facebook as strangers whom you will never meet, these are real people, real families, who are living with these conditions. They are our family, it is our daughter. Fight the ignorance, and do something more.

26 thoughts on “Ignorance

  • December 30, 2012 at 3:55 am
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    Very well said Courtney…..you are an amazing voice for this disease!!! Your daughter is beautiful & I can’t count the number of times I’ve cried reading your posts! Beautiful, amazing family!

  • December 30, 2012 at 4:01 am
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    Brenna and Evan are two lucky children! Amazing parents!

  • December 30, 2012 at 4:19 am
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    how anyone could look at the photo of a baby born with this and not feel concern for the child and the parents is beyond me. Evan and his parents are apparently as amazing as you two and Brenna are, and what looking at their photos does is make me relieved that both kids are doing so well and were lucky enough to get parents like you! Brenna IS beautiful — she’s got the most wonderful smile, and that’s just ONE thing that’s beautiful about her — and Evan is, too!

  • December 29, 2012 at 8:55 pm
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    Very well said Courtney…..you are an amazing voice for this disease!!! Your daughter is beautiful & I can’t count the number of times I’ve cried reading your posts! Beautiful, amazing family!

  • December 30, 2012 at 4:56 am
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    I am always shocked by the cruelness of people’s hearts. 🙁 Did you see the news story about the grown man who got jail time because him and his son were making fun of a little girl with cerebral palsy? He was imitating her walk at the bus stop and his young son joined in. Can you imagine?! I am SO GLAD he got jail time over it. So stupid! I’m sorry you had to see this, and the poor parent who does realize that’s their child’s photo being mocked. Ugh.

  • December 29, 2012 at 9:01 pm
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    Brenna and Evan are two lucky children! Amazing parents!

  • December 29, 2012 at 9:19 pm
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    how anyone could look at the photo of a baby born with this and not feel concern for the child and the parents is beyond me. Evan and his parents are apparently as amazing as you two and Brenna are, and what looking at their photos does is make me relieved that both kids are doing so well and were lucky enough to get parents like you! Brenna IS beautiful — she’s got the most wonderful smile, and that’s just ONE thing that’s beautiful about her — and Evan is, too!

  • December 30, 2012 at 5:37 am
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    There are some people who are so stupid and they do not care to learn about the problem these children have.It is to bad that they have nothing better to do than make fun of innocent babies that are sick and suffering.God have mercy on them.one of these days it will come back to haunt them. Brenna and Evan are two lucky little ones because they have such great familys. God Bless you all.

  • December 29, 2012 at 9:56 pm
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    I am always shocked by the cruelness of people’s hearts. 🙁 Did you see the news story about the grown man who got jail time because him and his son were making fun of a little girl with cerebral palsy? He was imitating her walk at the bus stop and his young son joined in. Can you imagine?! I am SO GLAD he got jail time over it. So stupid! I’m sorry you had to see this, and the poor parent who does realize that’s their child’s photo being mocked. Ugh.

  • December 29, 2012 at 10:37 pm
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    There are some people who are so stupid and they do not care to learn about the problem these children have.It is to bad that they have nothing better to do than make fun of innocent babies that are sick and suffering.God have mercy on them.one of these days it will come back to haunt them. Brenna and Evan are two lucky little ones because they have such great familys. God Bless you all.

  • December 30, 2012 at 7:10 am
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    From one ichthyosis mom to another, you are awsome! Very well said!!!

  • December 30, 2012 at 12:10 am
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    From one ichthyosis mom to another, you are awsome! Very well said!!!

  • December 30, 2012 at 9:09 am
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    Hi Courtney! I spent all of late last night and today reading all your blogs on baby Brenna. You have an amazing family. Thank you for educating me and others about your child’s rare disease. I first stumbled across the “like” this photo for a prayer… Most likely the same one you are referring to. I was overwhelmed with concern for the child on the picture. I was thinking to myself is this real? I read some comments and a lot of people mentioned your blog. So reading one of your blog lead to another. Next thing I know it’s 3 am! I’ve spent most of today reading your blog. My almost 2 year old son (New Year’s baby :))seen a few of Brenna’s picture and said gleefully, “I want to see… BABY! Cute!” Keep up the wonderful things you are doing. I can’t wait to read your future blogs! Happy New Years!

  • December 30, 2012 at 2:09 am
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    Hi Courtney! I spent all of late last night and today reading all your blogs on baby Brenna. You have an amazing family. Thank you for educating me and others about your child’s rare disease. I first stumbled across the “like” this photo for a prayer… Most likely the same one you are referring to. I was overwhelmed with concern for the child on the picture. I was thinking to myself is this real? I read some comments and a lot of people mentioned your blog. So reading one of your blog lead to another. Next thing I know it’s 3 am! I’ve spent most of today reading your blog. My almost 2 year old son (New Year’s baby :))seen a few of Brenna’s picture and said gleefully, “I want to see… BABY! Cute!” Keep up the wonderful things you are doing. I can’t wait to read your future blogs! Happy New Years!

  • December 30, 2012 at 5:26 pm
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    I’ve had icthyosis on my legs for most of my life. I use a product called Amlactin which helps the condition immensely. With continuous use, even once a day, transforms even the rest of my dry skin issues to soft, supple, moisturized skin. The directions on the bottle will say use twice daily, but I’ve been successful using it once a day for a week or two; once my skin’s in good shape, I only use it to maintain, like every other day and you can’t tell I have icthyosis or dry skin. The cost has gone up considerably, but worth it. Costco has the best price if you are a member. If you have health insurance that covers prescriptions, have your doctor prescribe Lac-Hydrin, but only after determining if it’s safe for a baby. If not, you may he maybe able to recommend something similar that’s safe for babies. Lac-Hydrin is the exact same thing as Amlactin. It was explained to me that some insurances cover it and some do not; if they don’t then you need to get the Amlactin, again, only if it’s safe for Brenna. I believe there are lower dosages out there. It really works. Good luck to you and Brenna in, if not finding a bona fide cure, then at least some relief that improves Brenna’s skin. My thoughts are with you.

  • December 30, 2012 at 10:26 am
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    I’ve had icthyosis on my legs for most of my life. I use a product called Amlactin which helps the condition immensely. With continuous use, even once a day, transforms even the rest of my dry skin issues to soft, supple, moisturized skin. The directions on the bottle will say use twice daily, but I’ve been successful using it once a day for a week or two; once my skin’s in good shape, I only use it to maintain, like every other day and you can’t tell I have icthyosis or dry skin. The cost has gone up considerably, but worth it. Costco has the best price if you are a member. If you have health insurance that covers prescriptions, have your doctor prescribe Lac-Hydrin, but only after determining if it’s safe for a baby. If not, you may he maybe able to recommend something similar that’s safe for babies. Lac-Hydrin is the exact same thing as Amlactin. It was explained to me that some insurances cover it and some do not; if they don’t then you need to get the Amlactin, again, only if it’s safe for Brenna. I believe there are lower dosages out there. It really works. Good luck to you and Brenna in, if not finding a bona fide cure, then at least some relief that improves Brenna’s skin. My thoughts are with you.

  • December 30, 2012 at 8:57 pm
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    I have to say I had no idea what the pic was. My first assumption was a burn victim. While I found the image disturbing, I an glad there are advocates for these babies. Can the disease be “outgrown”, or is it always a concern? I have seen a few pics that say “survivor”of harlequin.

  • December 30, 2012 at 9:39 pm
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    HI is a chronic skin disorder cased by parents having two recessive genes… Not curable but treatable.

  • December 30, 2012 at 1:57 pm
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    I have to say I had no idea what the pic was. My first assumption was a burn victim. While I found the image disturbing, I an glad there are advocates for these babies. Can the disease be “outgrown”, or is it always a concern? I have seen a few pics that say “survivor”of harlequin.

  • December 30, 2012 at 2:39 pm
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    HI is a chronic skin disorder cased by parents having two recessive genes… Not curable but treatable.

  • December 31, 2012 at 4:45 am
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    Hi, I’ve been reading Brenna’s journal for a while and she is just a doll. I have a friend whose child has EB, so I’ve seen some of what you all go through. Bless you all! Have you ever considered watermarking your photos to protect them? Such a shame that people are so cold hearted. Keep fighting, mama bear!

    Anna in MI

  • December 30, 2012 at 9:45 pm
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    Hi, I’ve been reading Brenna’s journal for a while and she is just a doll. I have a friend whose child has EB, so I’ve seen some of what you all go through. Bless you all! Have you ever considered watermarking your photos to protect them? Such a shame that people are so cold hearted. Keep fighting, mama bear!

    Anna in MI

  • December 31, 2012 at 9:00 am
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    Its just awful. I made a Facebook comment status about these poor children a while back. I have an article to write so stay tuned. It could have been Brenna, Evan, me. But it shouldn’t happen. Blogging and sharing correct information and personal experiences about Ichthyosis and other conditions is the only way to educate.
    Great post Courtney

  • December 31, 2012 at 2:00 am
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    Its just awful. I made a Facebook comment status about these poor children a while back. I have an article to write so stay tuned. It could have been Brenna, Evan, me. But it shouldn’t happen. Blogging and sharing correct information and personal experiences about Ichthyosis and other conditions is the only way to educate.
    Great post Courtney

  • January 6, 2013 at 6:11 am
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    Good job! You area wonderful mother! SHE IS beautiful! And you know? I have ictthyosis too and my daughter do not have the co.edition and the cruelty people steel ask me if she is my real daughter or is adopted.. first at all she is my real daughter from my belly is not adopted and if was adopted I do not see a difference…but the people still saying ” ohh thanks God she is normal…. and I feel like ?????? I’m not normal? . Do not pay attention that the people says you are amazing mother!
    CAROLINA

  • January 5, 2013 at 11:11 pm
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    Good job! You area wonderful mother! SHE IS beautiful! And you know? I have ictthyosis too and my daughter do not have the co.edition and the cruelty people steel ask me if she is my real daughter or is adopted.. first at all she is my real daughter from my belly is not adopted and if was adopted I do not see a difference…but the people still saying ” ohh thanks God she is normal…. and I feel like ?????? I’m not normal? . Do not pay attention that the people says you are amazing mother!
    CAROLINA

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