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2019 Top-Rated Nonprofit

Coping With Laryngomalacia, Inc

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Nonprofit Overview

Mission: To provide worldwide support, strength, and education for families coping with laryngomalacia, tracheomalacia, bronchomalacia, and pharyngomalacia

Results: As of October 2019: 263 care packages given worldwide. 45 custom airway pajamas given worldwide. 15 Chibebe Snuggle Pods given through the USA and Australia. 9 Malacia Meet-Ups through the USA. Over 4,000 families supported through the online Caregiver Support Group.

Target demographics: families worldwide

Direct beneficiaries per year: over 4,000 families

Geographic areas served: Port Monmouth, New Jersey

Programs: Breathe Easy Care PackageProgram, Project Pajamas, Chibebe Snuggle Pod Program, Malacia Meet-Ups, online support group, and educational resources.

Community Stories

247 Stories from Volunteers, Donors & Supporters

1 Sarah D.1

General Member of the Public

Rating: 5

This organization has helped me in so many ways!! My daughter was diagnosed with LM at 5 weeks old, and it has been a long 3 months since! She is scheduled to have surgery in the next week and they sent me a very thoughtful care package, to help us cope with everything.
I would have been so lost without this group and all the information I have learned. Because of them I have been able to fight for my daughter and get her the care she needs.

1 Emma S.1

Client Served

Rating: 5

Very supportive. Offers us LM families endless resources, a place to connect and a community where we don't have to feel different.

1 Jessica A.2

Client Served

Rating: 5

Coping with Laryngomalacia has been more than a "group" it is a family. When,my,son was diagnosed with Laryngomalacia, I was scared, i didnt know what this thing was let alone pronounce it! Later that night I took to the internet, the first site that popped up was Coping With Laryngomalacia. I was relieved because I was no longer alone, there was someone out there who understood my fears.
Fast forward 3.5 years, my son is doing great. He had the life changing surgery @ 18 mons. and received his care package which was filled with a beautiful crochet blanket, which is his favorite.
Although my son no longer has many issues, I am still very active on the FB page. I am blessed to have to opportunity to be a World Leader, where I hope to continue to support families on their LM journeys.
There will forever be a special place in my heart for Coping with Laryngomalacia

General Member of the Public

Rating: 5

So supportive and extremely helpful. Our son was diagnosed with tracheomalacia at 1 week old, then laryngomalacia at 1 month, along with gastric reflux, cyanosis, sleep apnea, dysphagia, aspiration and asthma. Try to Google that for help! (sarcasm intended). Then our son had a supraglottoplasty and epiglottopexy at 2 1/2 months old. This non profit organization sent us a rushed care package to help our baby during his hospital recovery icu stay. The love, support and education have been amazing!!! Our son is now scheduled for revision surgery and I feel so much stronger this time around because of this organization and group of people! So blessed ❤

General Member of the Public

Rating: 5

My son had breathing problems and these people sent us gifts and information. I found it to be helpful. Joey Barreras

1 Taylor W.

General Member of the Public

Rating: 5

I've witnessed Coping with LM do some amazing things for parents and children that are dealing with Laryngomalacia, they are a very kind organization & very giving! These hard working parents, grandparents, aunts & uncles that go out of there way to help these families deserve way more than just a high rating! They are an amazing group of people!

2 Mary Beth M.

Client Served

Rating: 5

It is so scary to hear your baby breathing across the room. I thought I was just an over protected mom. Turns out I wasn't and my baby has LM and TM. I would never of made it through the first 2 years without the support of this foundation and listen to other mither's stories. Now my baby is 4 and very healthy after his surgery. I try to give encouragement to other parents whenever I can on th Facebook page !

1

General Member of the Public

Rating: 5

This charity has helped a great many of people I know in need of comfort, knowledge and guidance through their son's surgeries and many diagnoses. I love to donate to such an incredible organization!

Cristina N.

General Member of the Public

Rating: 5

When my son was diagnosed with laryngomalacia when he was 6 weeks old, it was incredibly overwhelming...and there was very little information out there. I am so thankful for this group as we navigated through the scary unknowns. We received a care package in preparations for my son's surgery, and it was so heartwarming to know we were thought of, and cared for, by a community that understands our journey.

Previous Stories

Client Served

Rating: 5

There aren't many resources out there for laryngomalacia. This was my go to group when my son was first diagnosed. They have been so helpful through the diagnoses, treatment, surgery, and recovery.

Rachael G.1

Client Served

Rating: 5

Coping with LM has been an outstanding resource for my friend Tarah and her son, who was diagnosed shortly after birth. They've been incredibly supportive, even going so far as to ship a care package to her overnight for her son's surgery. They provide amazing education and support for not only the parents of children with LM, but the family and friends who are also confused and curious about this condition. They're wonderful, and five stars isn't enough!

Nikki S.1

Donor

Rating: 5

You were there for my friend Tarah when she needed support most. This group really cares about the kids and their parents♡

Jaymee S.

Client Served

Rating: 5

I have never felt such a relief as I did when I found coping with LM. I was a 2nd time mom and my infant was struggling to breathe. Not a doctor in sight would listen to me. I found thi group and figured out how to explain things and exactly what we needed to do. I am grateful beyon words for coping with LM.

Client Served

Rating: 5

Thanks to Coping with LM, I never journeyed alone. Whenever my daughter was newly diagnosed, I found this organization who guided us through a very tough time. They gave me questions I didnt know I needed to ask, advice when I didnt know where to turn, kind words when we hit rough patches, & gifts when the scary word "surgery" was brung up. Without them, my daughter would NOT be getting the proper care she so desperately needed.

Client Served

Rating: 5

Avery with her lu the lamb! So happy I found CWL When my daughter was in the children's hospital for laryngomalacia.

Liz A.1

Client Served

Rating: 5

This group was a lifesaver for my family! Other parents helped me problem solve and advocate for my son while offering so much emotional support! Thank you so much Stephanie for all of your hard work!!

General Member of the Public

Rating: 3

Hi I am Girlie Deneros from Philippines, upon checking in the internet about Laryngomalacia, I encountered your website, and I would like to ask if you could also help my 1 year old son, who was born with multiple congenital anomalies and diagnosed with Laryngomalacia. Baby Ramilan also has both micropthamia( small eyes) which means from the time he was born he is totally blind. from 4 months until now, his feeding is thru NGT (tube feeding). the doctor already advised us to shift to PEG feeding, but due to his recurring Pneumonia his operation is always postponed. I hope thru this website my son could be able to feed thru his mouth, if it is possible to undergo operation to treat his laryngomalacia. I noticed also, that during his sleeping, he sweat a lot, suspect that he might also has sleep apnea, but I was not able to discuss that to his pedia. I hope you could help me and my son. Thank you so much and more power!

1 Amber P.1

Client Served

Rating: 5

Coping with LM has given me the knowledge to know what my son needs in his care. They've provided me with a community of support to help through even the hardest of days. If ever I have even the smallest of questions they are there for me. They give hope when we're scared and lost. Without coping with lm I would be at a loss on what to do for my son. Stephanie is personally there for each and every parent.

1

Client Served

Rating: 5

We have two children with LM. We had zero resources when our son was diagnosed and he had numerous problems that we didn't exactly know who to talk to about. When our youngest was diagnosed with LM and TM I knew there had to be more information out there and found Coping with LM. The about of information and resources that we have received through CLM has been priceless. From what to expect during surgery to the right questions to ask and even listed of specialists that are well informed. LM can have so many compounding factors and I know we would still be running blind if it wasn't for this amazing organization. The online community is also an endless source of comfort knowing that you are not the only family going through these struggles. We cannot say enough great things about CLM!

1

Client Served

Rating: 5

Coping with LM and the community that surrounds this great organization has helped me so much in the 6months of my daughters life so far and especially since she was diagnosed with LM at 2months old. Stephanie is always super helpful and supportive and easy to get in contact with. They quickly helped a friend of mine who was going through a rough time with her son and sent him a wonderful care package a.s.a.p. I'm so happy to have heard of and got to know of coping with LM. I will support them in any way I possibly can and forever spread the word of this great organization.

1

Client Served

Rating: 5

I found this organization and It's Facebook page on a Google search after my 2 month old was diagnosed with Laryngomalacia. I have learned so much from Stephanie and the other wonderful people here. With the information I've learned here and encouragement from others I have become a very educated advocate and voice for my son I didn't realize how much he was truly affected by LM until I heard stories from others that I could relate to. We received a care package in preparation for my sons upcoming surgery and I look forward to contributing to this program in the future as well. This is an organization doing great things for a very life changing but not well known condition.

Donor

Rating: 5

I need more resources can someone please assist. Does anyone have any good resources or point in the direction of an individual or website or even agency that can explain more on children with laryngomalacia and reactions from colds??? My baby boy B was diagnosed with moderate Laryngomalacia around 6 weeks. I was extremely worried. However now that he is almost 2 years old he is doing much better. The only thing is: if he catches a common cold, the retractions, and sucking in between the breast bone becomes intensily present. I believe he will be asthmatic like my other children and myself. When my son gets a vold he wheeze and retracts rapidly and I give him a treatment and it clears things up and he is content. Even though this is only his 2nd ER visit. I would like something better to manage his breathing for these incidents. Im glad to have found this group. Hopefully I will gain a wealth of information.

1

Client Served

Rating: 5

This is a great organization. We have been provided lots of helpful information. We received a care package for our daughter Esmae before her surgery. We loved everything in the care package. Thank you so much for making such a wonderful organization.

1

General Member of the Public

Rating: 5

My sweet little man was diagnosed with Laryngomalacia at 3 weeks old. After getting a second opinion and a Dr we trusted we decided to go the surgery route at 6 weeks old to make life a little easier on everyone- especially him. Without the guidance from Stephanie and a few other moms whose babies have LM as well I wouldn't have known where to start. This group helped me do my research, find ways to make my son more comfortable, and overall just made me feel like I wasn't helpless and lost. Before his surgery we received a letter and a care package with all these awesome goodies inside. ( Jace loves his Lu the lamb and his base ball lovie to this day!) I also got great advice and an idea of what to expect going in to the ICU after everything was done. After surgery I got an overwhelming amount of love, prayers, support, and advice. I would have no idea where we'd be without this group and I'm forever hratsful and dedicated to raising awareness for our little pintsize power houses. ❤️

1

Client Served

Rating: 5

When getting a diagnosis for your child is confusing and overwhelming... there is a group that is there to help and support you as a parent through out your journey. ❤

1

Client Served

Rating: 5

When our son was diagnosed with laryngomalacia this past March, Coping with Laryngomalacia, Inc. was an amazing support! We have felt such a sense of community and learned so much, all because of CWL. As we continue our LM journey, I know CWL will be right at our side, helping us, educating us, and supporting us.

1

Client Served

Rating: 5

Stephanie Hueston and all of the wonderful people that make up this organization have given my family hope in a time of apprehension and worry. The personal support along with extensive references and resources have helped me learn how to be a better parent to my LM warrior. I am so grateful for this organization and everything that it stands for. Thank you CWL!!

1

Client Served

Rating: 5

My sweet boy was diagnosed with laryngomalacia at 2 weeks old. This group has been extremely helpful, in ways I can't even describe!

1

Client Served

Rating: 5

CWL has not only empowered me with knowledge as a mother and advocate for my child, it's also given me an invaluable community of support. It's a very unique organization, and I'm eternally grateful for the hard work that Stephanie does.

1

Client Served

Rating: 5

Coping with LM has allowed us to feel normal again. It is great to know that we are not alone at any time of day or night, and we are supported on the Journey we never thought we would be taking. Our daughter Keiley has received both a Chibebe Snuggle Pod and a care package through Coping with LM's great support programs. Keiley lived in her Snuggle pod which assisted her breathing until she started crawling, now she uses it as a bean bag to "Chill". The care package was a great comfort while Keiley was in hospital on a respirator after surgery. Knowing that she had her own blanket and gown, rather than relying on the hospital ones which can be so scratchy from years of use! I can not compliment the work of Stephanie and her family enough for what she does for our Babies, this is in no way enough!

Client Served

Rating: 5

When my daughter was diagnosed with moderate LM I was so scared. Coping With LM helped me realize I am not alone and educated me on what bumps in the road we may encounter and how to be prepared. I don't know what I would do with out this organization!!

1 Writer

General Member of the Public

Rating: 5

Coping With Laryngomalacia gave me more support and education about my son's condition than I could have ever asked! The community of parents I have met that are going through the same thing has been amazing. Thanks to CWL, I knew exactly what questions to ask my son's ent and I felt comfortable because I was already familiar with his condition. Thank you so much, CWL!

Previous Stories

General Member of the Public

Rating: 5

I am so grateful for all of the support, resources, and information I've received through CWLMI. I was truly clueless about my son's diagnosis and don't know what I would have done without this organization and their support group!

Jen_75

Client Served

Rating: 5

My l.o. is 8 months old and was diagnosed with laryngomalacia at 4 months after being misdiagnosed a couple of times. This group has been a fabulous resource to me and I only wish I found it sooner. They are truly helpful and do amazing things.

General Member of the Public

Rating: 5

They are a great support for new parents of kiddos with LM.

Client Served

Rating: 5

I am so grateful for this organization! After getting our sons diagnosis at 12 weeks I didn't know where to begin. This organization has educated me and my family and has provided us with a special care package for our sons upcoming sleep study. We are so thankful for y'all!

1

Client Served

Rating: 5

Coping with laryngomalacia, inc has been very helpful in the past few weeks as we just found out our child has laryngomalacia. The resources have been very helpful to help us learn and understand her defect.

1 Heather288

Client Served

Rating: 5

This group was our main resource when our little guy was diagnosed with LM. We were told by all the Drs that we had seen we just had to wait things out and there was nothing we could do. Reading other parents of LM babies' stories helped us find what worked best for us while avoiding a lot of trial and error. So glad this exists!

1 Nila G.

General Member of the Public

Rating: 5

This organization has helped our family so much. The information we received helped us advocate for the best for our LM baby, and the support kept us strong through it all.

1 Chessa B.

Volunteer

Rating: 5

Such a wonderful group. We live in a small community where Laryngomalacia is never heard of. They have given us so much information to help us get the care we need. Thank you so much for you wonderful help!

3 Jessica327

Client Served

Rating: 5

Coping with laryngomalacia has been there for us from day one. When i first researched the diagnosis while waiting on a scope in my ents office... the site popped up. I read the letter steph wrote to the new parent and just cried... my perfect little squeaky baby needed surgery... the sqeaks weren't cute, they were life threatening. No one understood, and i felt like my husband and i were all alone. Coping with lm has taught me so much. Whenever I'm worried about my son's health i go to the site, or the Facebook page to find answers. I am not sure how i would have gotten this far without coping with laryngomalacia!

1 Jill96

Client Served

Rating: 5

We have found so much support this past year through this organization. Getting a diagnosis was one thing but finding out your son was of the few that would need surgery and have a year from he'll was another. Thank you for all of the support.

Previous Stories
3

Client Served

Rating: 5

We were diagnosed with laryngomalacia and had surgery scheduled one week later. We found this site. Not only did we find great resources, information, and support; we found d hope. They sent us a care package with a lovely blanket and Lou the lamb. We even got our package prior to our surgery! I can't express my gratitude for this nonprofit organization. We have been beyond blessed.

1 Nicole178

Client Served

Rating: 5

I am so thankful for this non profit. As a mom of a LM and TM baby I look to their support on a regular basis. They are a great resource!

1 Justina Y.

Client Served

Rating: 5

I found CopingwithLM.org after 8 months of searching for help for my son. He was diagnosed at 6 days old with laryngomalcia but we were told he would outgrow it. After months of struggles with eating and him being unable to sleep I found this group. I soon learned that sleep apnea and reflux often go along with LM. My son had both finally at 13 months old he had surgery to correct his sleep apnea. During surgery they found he had severe LM and preformed a supra. The parents in this group are so helpful, kind, and supportive! Stephanie the founder of Coping with LM has done so much to support all of us and we received a wonderful care package before his surgery. I'm so incredibly thankful for all those organization does!

1 Tonya28

Advisor

Rating: 5

Very supportive to new parents. My daughter was diagnosed at birth after her father and I insisted that something was wrong. We both were familiar with newborn cries and here just wasn't right. We also noticed she breathed weird. She has a tracheal tug and GERD as well (which we noticed in the hospital right after birth). She was finally put on reflux meds this week. She's been on breathing treatments since she was 4 months old. I've found so much support and comfort in this group!

1 DA__

Client Served

Rating: 5

This is an amazingly supportive organization. When my daughter was born we were thrown into a spiral of health concerns, uncertainty and worry. I stumbled on CopingWithLM and was able to reach out to other parents for support and information. My daughter received a care package weeks before her surgery and still sleeps with the blanket 3 years later. Thank you CopingWithLM!

1 Janet154

Client Served

Rating: 5

This has been a wonderful support group full of information for us!!!!

1 Alissa J.

Client Served

Rating: 5

This group is amazing! My daughter is about to have her first surgery, and without these amazing people I would not know where to turn!! I cannot wait to get her a care package to make her surgery go smoothly and keep her comfortable.

1

General Member of the Public

Rating: 5

Coping With Laryngomalacia is a great nonprofit organization that provides tremendous support and resources for families coping with LM, TM and BM!

1 Kristen85

General Member of the Public

Rating: 5

Our little man has come so very far!! Being part of such an amazing group who understands exactly what you are going through is so helpful and reassuring. Reading other people's stories and seeing what they have/are going through, really makes you red not alone. I know there are days I just feel like I'm by myself, and no one gets it. Then, I remember this group and know I'm not alone at all!

1 Nicole140

Client Served

Rating: 5

My 2 year old daughter has LM, TM and BM. It has been a rough journey but this organization has been a great source of information and support.

Previous Stories

General Member of the Public

Rating: 5

Coping with Laryngomalacia, inc has helped me so much deal with my daughters diagnosis of LM, TM and IAC. I was so lost and scared and had a really difficult time finding useful info about her conditions. It has been nice knowing we are not alone.

1 Shannon140

Client Served

Rating: 5

6 months ago I have never heard of Laryngomalacia and was in a world of unknown. This organization has provided tremendous support every step of this journey, whether it be information, questions to ask our doctors, emotional support, and a care package. This organization helped me to help my son. I will forever be grateful.

1 Suzi5

Client Served

Rating: 5

This is a wonderful organization of people who truly care and try to help. Laryngomalacia is a common problem yet most people have not heard of it until their child gets diagnosed. It can range from very mild (no big deal) to very severe (very big deal). There are all levels of severity discussed in the Coping with Laryngomalacia Private Facebook Group which is wonderfully managed by Stephanie. The group and the organization are very supportive and help parents, grandparents, and anyone affected by this diagnoses to cope and learn strategies as well as spread the word to the world about Laryngomalacia and other associated diagnoses.

4

Client Served

Rating: 5

This is an amazing group that has given us so much more information than we have ever received from any medical professional. Our ENT is wonderful but we found him after reading the stories of other LM families and deciding that we needed to speak up at the pediatrician's office. We are grateful for the support shown to us through their wonderful facebook page as well as a very kind care package we received before a surgery. This is a nonprofit that truely supports it's cause.

1

Client Served

Rating: 5

So thankful for this organization and all of their information. If it wasn't for this site I never would have pushed for more answers from her doctors! I'm also glad they have connected me with other parents going through the same struggles. It's good to know we are not alone.

1

General Member of the Public

Rating: 5

I'm from Malaysia, currently my 6m first twin admitted in General Hospital. He had been diagnose with Laryngomalacia..we admitted since 2/5/2016 until now... currently using bypap via tracheostomy... i woukd like to join this support group hoping to gain more knowledge regardong my son condition.

1

General Member of the Public

Rating: 5

When we got the diagnosis of laryngomalacia we didn't even know how to pronounce it let alone what it was. I asked the Dr. For more information but was given a small handout. So I searched on Google and coping with laryngomalacia came up. I clicked and began reading and found relief that I have help. So many awesome resources and families going through this along with us. We were not alone. It was such am amazing feeling to know that we were not alone and had resources to seek. This journey was very scary at first but now we have a wonderful community to help us.

1

General Member of the Public

Rating: 5

I'm from the UK my son was diagnosed at 5 weeks old he's now 16 months and his condition is ongoing. He is still on repeat perscription for gaviscon and seems like he developing a sleep disorder which at first I thought may be down to having a new sibling. He wakes continuously through the night his breathing still loud that's if it doesn't stop for a bit and seems like an irritable kid during the day. I still don't fully understand the condition it still scares me and I still don't find it so "common". Well done to this charity will spread the word through social media.

Jess26

Client Served

Rating: 5

I have 2 little ones with Laryngomalacia, one of which also has CHD and the journey has been so rough at times. Most new moms watch their babies breathe just because they are nervous that something may happen; however we watch our babies breathe because we know that the simple task of taking each breath is a struggle for them. CWL has been an amazing support through both of my children's medical journey and I am not sure where I would be without this amazing group.

Sally75

General Member of the Public

Rating: 5

Invaluable support at a time when we were thrown into the unknowns of a airway defect. Having never even heard of LM, TM, BM, GERD, supra, aortapexy someone was always there to offer support and advice and 16 months in I feel now I may even be able to offer some support to new members starting the journey.
This organisation allows me to do that and they ask nothing in return. Sally

1 Sarah301

General Member of the Public

Rating: 5

When my son was diagnoses around 10 days old I was terrified. The first doctor we saw didn't offer much information, my family has no idea what it was and just commented on his scary my baby sounded. I found this group and finally found the information I needed to help him, found him a specialist, found the support I needed to care for my man! This is a great organization!

1 Tricia H.

Client Served

Rating: 5

My son was dianosed at around 6 weeks old with LM. He had his very first surgery at almost 3 months old. Coping with LM has been a real life saver. They are always teaching out to help people that are dealing with LM. Not only is the founder a great woman but the members are awesome as well.

Previous Stories
1

General Member of the Public

Rating: 5

Great charity and a great group of people. They helped us understand what as happening to our child. We had the love and support of strangers, that have now become part of the family.

2 Kelly195

Client Served

Rating: 5

When my daughter was diagnosed with laryngomalacia at 7 weeks old, I felt alone and terrified. this past year has been challenging to say the least--from feeding and weight issues, reflux, numerous dr and specialist appointments and now finding out a week ago she will need to have surgery that we were originally told she would not need to have--however, the support and the community from Coping with LM has been incredibly helpful. We are so worried about her surgery and can't even imagine how her 14 month old mind is going to cope and understand this but our worries have been helped by the special and thoughtful care package that this organization sent her so she can have some comfort during her hospital stay. Coping with LM is a wonderful support network for us and I don't know how we would've managed this past year without their knowledge, resources, and support

1 Jennifer525

Client Served

Rating: 5

I was so thankful to find Coping with LM after my daughter's diagnosis. I learned so much about her condition and knew what to ask her doctors. I am thankful to know we are not alone in dealing with this.

1 Naomi C.

Client Served

Rating: 5

It's been a hard year and couldn't have done it without there support xx

1 Heather242

Client Served

Rating: 5

My son was diagnosed at 6 weeks old with Laryngomalacia. After a poor sleep study, he was determined to need a laryngoscopy, broncoscopy, and supraglottaplasty. Within 6 days of getting our sleep study results, we were having surgery. I applied for a care package for my son and it arrived in 4 days, so he was able to take his blanket into surgery with him, and his ENT lived his special socks. My son enjoyed his stuffed lamb and it comforted him throughout the scary ordeal. We are forever grateful to this group for its kindness and support