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January 29, 2014

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January 29, 2014

This incredible nonprofit has created a community of families whose children are suffering from the same medical condition. It is the only place I could find to ask questions, get information, advice, and support from other parents who are going through the same thing. Everyone is kind and understanding and supportive. This nonprofit also has different programs that parents can apply to and receive donated funds, supplies, etc. This is a wonderful organization!

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Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2014

December 12, 2013

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December 12, 2013

Steph, you're awesome and CWL is proof. I'm very proud of you for using your own experiences to help others affected. Keep it up!

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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

When was your last experience with this nonprofit?

2013

July 21, 2013

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July 21, 2013

This is an unbelievable website! Stephanie does an extremely wonderful job getting everything she can out there about LM! She works very hard and her determination goes a long way! With being a mom of 3 little kids I don't know where she gets her time and energy to keep it going but she does with many new things coming up all the time!! Steph... Your awesome at this and keep up your amazing work!!

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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

When was your last experience with this nonprofit?

2013

November 12, 2013

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1 previous review
April 18, 2013

My daughter was diagnosed with LM at 4 weeks. A month after that she started losing weight. I was refered to an ENT. The ENT did a scope and suggested surgery. I scheduled surgery but in the mean time... more

November 12, 2013

My daughter was diagnosed with LM at 4 weeks. I was told that it was mild and she would grow out of it. I let it go and continued to deal with eating issues. It took her 1 hour to finish a 4 oz bottle. She was burning more calories trying to eat than she was consuming. It wasn't until after she started to lose weight that her doctor sent us to an ENT. Up until this point I could not find a lot of information for LM and what the expectations were of surgery or letting her grow out of it. I recieved no feedback from her doctor or ENT. Her ENT said lets do surgery but provided no pros or cons. I received far more information from Coping With Laryngomalacia, Inc than anyone else. I learned so much from other parents and the website alone. This is an amazing organization for families that are trying to work through LM. My daughter became a new baby right after surgery and started to eat with no problems. I probably would have said no to surgery if I didn't have all the information I needed and the doctors didn't provide it this organization did. Thank you.

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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

April 18, 2013
1 person found this review helpful

My daughter was diagnosed with LM at 4 weeks. A month after that she started losing weight. I was refered to an ENT. The ENT did a scope and suggested surgery. I scheduled surgery but in the mean time I was trying to find information and details about LM and the surgery. I found websites that talked about LM and explained what it is but nothing gave me answers I was comfortable with. i researched this for weeks when I came across Coping With Laryngomalacia. There website was so helpful and answered so many of my questions. They have great programs you can apply for. Their facebook page has other parents with the same problem. I would ask a question and get answers and experiences from other people. At this time I was still debating if I should do the surgery because she had mild/moderate LM. After talking to other parents and reviewing the website I felt like I was educated enough to make a good decision. The surgery was the best thing I could have done for my daughter. She is a new baby with more energy to act like a normal 3 month old. People in general don't speak enough about different issues for whatever reason. To see somebody with the same idea, to get the information out there, was refreshing. Thank you!!!!

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Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2013

April 14, 2013

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April 14, 2013

To me CWL is the single, best source of informaton on LM, BM, TM & related illnesses on the web. On my sons diagnosis back in 2008, there was no support groups. Then finally a guiding light appeared, which has regained the sanity of many LM parents out there. For any parent whos child is affected, they will know .... this is a fight. The condition is only now being taken more seriously & ENTs are becoming more aware, this can be a testiment to the hard work CWL do. The additional links to surgery support packs, shout outs on important dates add to the overarching support they give to parents. Thank you CWL.

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Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2013

July 30, 2012

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July 30, 2012

Before I found CWL I felt very alone, Unless you have been the parent of an LM baby you do not understand what these babies, and parents are going through. CWL has been a great outlet and place to get advice from other Parents who have gone through this or are going through. Thank you Stephanie and CWL members for your support and advice

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Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2012

November 30, 2011
3 people found this review helpful

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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

More feedback...

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

June 24, 2011
3 people found this review helpful

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June 24, 2011
3 people found this review helpful

My first meeting with the word Laryngomalacia was over 17 years ago and didnt meet anyone who had heard of it back then....... Infact alot of people did not even know what a Larynx was :) then 14 years later my much awaited child had the familiar stridor and I knew exactly what it was thats when LM became apart of my everday life I then had another son 2 years later who also has LM the last 3 years of our lifes LM has been there it hasnt left yet along with its relatives reflux and apnea, desaturation and squeak ...... Its been lonely until i found this fantastic support group full of parents who know just what LM is and how it can affect life I so wish something like it was around when I first met LM thank you Stephanie for creating such a fantastic support group

The Great!

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

It has given me advice, understanding and virtual friends who know just what it is like to walk in my shoes

Ways to make it better...

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

Im not sure maybe give them a huge donation to continue doing the great job they do :)

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