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April 15, 2013

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April 15, 2013

After finding CWL my husband and I no longer felt alone in the LM fight. My child was dx with LM at 6 weeks and we had no idea what this condition was or how hard it was going to be to deal with it. The wonderful team and members of CWL helped us through and gave us answers to questions that even my daughters Drs couldn’t answer. My daughter rec’d a beautiful blanket and socks when she went through her supraglottoplasty, along with kind words of encouragement. The blanket is something that she carries around daily; it became a part of her support system. The support given to us moved me so much that I decided to become a volunteer with CWL to offer moms and dads any help that I could give. I am so thankful for the assistance and support we have received from CWL.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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

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.

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

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!!!!

More feedback...

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

August 17, 2013

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August 17, 2013

Coping with LM was a big help to me. I was able to know what to ask the ENT doctor to ensure my baby was having the diagnostic tests she needed. The founder and president was quick to email me back with answers and support. She gave me the name of an organic thickener for my baby's milk when I couldn't find one I felt was suitable. It's nice to have this resource for support when so few people in our lives know of LM. Thank you!

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

July 21, 2013

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July 21, 2013

I no longer felt alone when my baby was diagnosed with LM after finding CWL. Stephanie is a great team leader and great support. They are doing a great job in helping ppl like us feel at peace. Thanks for 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

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!!

More feedback...

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 17, 2013

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July 17, 2013

my daughter was diagnosed with LM at birth. after a week in the hospital she was released. when she was taken ill and was hospitalized again; i needed information and i as a mother felt all alone. by coincedence i found CWL and with their support and great information i don't see my childs future as bleak as i first tought and i'm not afraid anymore thanks to the information. also talking to other parrents and sharing solutions helped me alot. knowing you are not alone in your struggle is very comforting.

Ways to make it better...

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

i would like a dutch chapter in the Netherlands.

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

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.

More feedback...

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

February 15, 2013
2 people found this review helpful

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February 15, 2013
2 people found this review helpful

When we were first given Rylan's diagnois of Laryngomalacia, the first thing I did was google it. I was looking for information & support. We were scared & desperate for someone with experience to help guide & reassure us. We found all of that, and more, in CWL. From the very beginning they were able to help us. Breastfeeding support, related issues (FTT, reflux), sleeping positions, etc - they were able to answer all of our questions. And it was a personal experience. I'm still in touch with the volunteer who very first helped me when Rylan was FTT & having a hard time breathing & feeding. We applied & received a Nap Nanny, which helped Rylan be able to get good rest. We also received formula & formula coupons from CWL. The other members of CWL were able to tell me what to expect from our different appointments - very helpful! CWL has helped us tremendously. I'm not sure how we would've made it thru this first year without their support. I highly recommend CWL for anyone who has a child that has been diagnosed with LM, TM or BM. 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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