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September 17, 2014

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September 17, 2014

I struggled getting a diagnosis for my daughter and the battle was all uphill. I searched and found CWL group on FB and was welcomed openly an warmly by all the parents who know first hand about LM and the trials of this diagnosis. It is a an amazing support group and everyone is so knowledgable through their own experiences. It helped me to get through the scary and unfamiliar parts of LM and also helped answer so many questions that I had about the unfamiliar and I chartered grounds we were walking. I am in a very small town in Ontario Canada but felt so present in this community. More recently I referred another mom of a baby boy to CWL to which she has felt so welcomed as well. Everyone provides so much good here and I thank everyone from the bottom of my heart. God bless all the little ones and all of the parents. Xo
September 17, 2014

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September 17, 2014

When I was pregnant with my son I dreamt of all the wonderful firsts that were to come. I never imagined that my son would be born with an airway defect that made him struggle to breath, eat and ultimately fight for every moment. I found this organization one night in the hospital when my son was 3 weeks old. He had been struggling to eat and breath since birth and then he just stopped breathing. Suddenly I found myself in a world of firsts I wanted no part of, first IVs, first feeding tube, first heart monitor first apnea monitor, first night crying all night holding him praying he keeps breathing. This organization has given me so much knowledge, strength and comfort I can't even begin to explain it. Connecting to other parents who live in this terrifying world of laryngomalacia and tracheamalacia has been and continues to be invaluable.
September 17, 2014

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September 17, 2014

When our son was diagnosed with laryngomalacia CWL helped answer our questions and calm our worries. Now that our ENT has suggested surgery, we find it helpful to talk to with other parents who have experienced this. The CWL Facebook page has allowed us to better understand our sons condition and how to cope with it.
September 17, 2014

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September 17, 2014

Coping with Laryngomalacia is a wonderful organization that helps parents when they are at a very low point. When you told that your child has an airway defect it is extremely scary, espically considering the lack of information about LM. This group provided support, resources, and most importantly a way to connect with parents going through or have had gone through the same thing. It is a wonderful organization.

Robin Bryant
Birmingham, AL
Mother of a now almost 3 year old LM survivor
September 17, 2014

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1 previous review
November 30, 2011

CWL changed my life the support and advice have received I could never put limit on. My son received a blanket when ge 28days old shortly after his surgery to know a group of people were thinking of ... more

September 17, 2014

Coping with LM, far exceed any expectations I had for a charity. From practical support (nap nanny) to emotional support (private support groups) to practical advice on the website. I. Honestly don't think I would have managed to cope with our steph and Coping with LM.
November 30, 2011
3 people found this review helpful

CWL changed my life the support and advice have received I could never put limit on. My son received a blanket when ge 28days old shortly after his surgery to know a group of people were thinking of us gave us strength in our darkest hour. More recently jenson has received a nap nanny he stept for 7 hour stright first time ever. Thank you so much for all you have done for me and my baby

R.Murphy

The Great!

I've personally experienced the results of this organization in...

Personally

Ways to make it better...

If I had to make changes to this organization, I would...

Public funding

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

How did you learn about this organization?

Facebook

When was your last experience with this nonprofit?

2011

September 17, 2014

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September 17, 2014

Coping With Laryngomalcia, is a wonderful group for those of us who have a child with an airway defect. I found great comfort and support knowing there were other parents going through what I was, feeling what I felt, and knowing I was not alone made a world of difference. I am so lucky to have found such a great cause not only to be a part of but support!

Ways to make it better...

If I had to make changes to this organization, I would...

None

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When was your last experience with this nonprofit?

2014

September 16, 2014

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September 16, 2014

They really helped us understand our son's condition and how to be advocates for his health!
September 16, 2014

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1 previous review
August 20, 2012

Before I found CWL, I felt extremely alone. I hadn't heard of Laryngomalacia, and thought for sure my daughter was the only one. I thank God for tihs support group everyday. My daughter had a diffi... more

September 16, 2014

I found coping with laryngomalacia after my then 4 week old daughter spent 5 weeks at mayo in Rochester Minnesota. I had just experienced life and near death with my daughter, and I felt so alone. She had undergone surgery to fix her laryngomalacia, and completely crashed the day after surgery. When we finally made it home after 5 long weeks that felt like 5 years, I opened my computer hoping and praying I wasn't the only one out there that has dealt with this. I saw a few things, basically saying laryngomalacia is a "common airway defect". Only 3 to 5 percent experience life threatening complications. This wasn't helping me, I needed people, I needed other experiences like mine, I was grasping for anything, and by the grace of God, I found coping with laryngomalacia on Facebook. Wow, I had tears flowing, and I posted on their wall. Not only did I receive the support I needed, I found some of the best friends in the world. I needed them, and they needed me. My daughter was also on a special formula, and this wonderful support group sent me formula every month. We have received so much from this, I am so excited to give back. They are my number one. I thank God for bringing them to me. I cannot thank you enough for coping with laryngomalacia. I will support them my whole life through. Love you all.
August 20, 2012

Before I found CWL, I felt extremely alone. I hadn't heard of Laryngomalacia, and thought for sure my daughter was the only one. I thank God for tihs support group everyday. My daughter had a difficult time after her supraglottoplasty surgery, and is doing fabulous now. She still has to sleep inclined and with CWL, they had nap nannies donated to them for children that needed them, and we were one of the lucky ones!! Our daughter sleeps great and couldn't be happier. I sometimes still feel alone, but then I just head on over to the CWL support group and know that I am no longer alone. All of the WONDERFUL people on this support group, especially the founder Stephanie Paden Huesten, she is absolutely wonderful!! I couldn't be happier with them, it is the best support group by far and as soon as I am done with Nursing School I plan to give back to this group over and over again! Thank you CWL, you were definitely a live saver!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

September 16, 2014

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September 16, 2014

I found CWL when my son was diagnosed with LM. I didn't know the first thing about this condition until I found this page. I could ask a question in the middle of the night and get an answer. His LM was so severe that he had to have a supraglottoplasty. We spent a week in Levines Children's Hospital and one night in PICU I know that may not sound like a long time but it felt like a lifetime to us. He is now wonderful but still struggles with LM daily and I can always turn to this page for support and advice. Also, after my pint sized powerhouse had surgery (since I didn't have a computer to sign him up before because we were in the hospital) he received a care package in the mail! With lots of goodies for both him and me! CWL has a special place in my heart and always will!
September 16, 2014

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1 previous review
January 25, 2013

Hello, I have to say CWL has been a life saver for me and my family. I have a baby daughter that was diagnosed with LM very young. She had such a hard time breathing and I was so worried for her ever... more

September 16, 2014

I found CWL when I googled Laryngomalacia almost 3 yrs ago. My pediatrician diagnosed my then infant daughter with it, and I had never even heard the word in my life. I asked him to spell it for me and researched away. Not a lot came up online, other than a few Dr reports.... And then I saw it was a group on Facebook! It was so comforting to know there were others out there dealing with the same things we were. The mom to mom help, advice, and experience was priceless and still is 3 years later. We have become a malacia community. a support group, and close friends all around the world!
THE BEST non profit ever!!!!
January 25, 2013

Hello,
I have to say CWL has been a life saver for me and my family. I have a baby daughter that was diagnosed with LM very young. She had such a hard time breathing and I was so worried for her everyday. Her paediatrician said it was a watch a wait period, which was excruciating for me. And
my Family Dr could hardly pronounce Laryngomalacia!! Through the guidance of Stephanie and other moms on the page, I had a lot of questions answered and knew what tests were needed and what they would entail. We got through the first year of my baby's life with confidence support and knowledge. Thank you CWL!:)

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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