I am the mom to an 8 year old CDH survivor. I have been a member of CHERUBS since she was born, started serving on committees approximately 5 years ago, and have been a member of the board for almost 3 years. I served as the Treasurer for CHERUBS for about 2 years, and then moved to the role of Vice-President about a year ago. Through volunteering in these roles, I have had an inside view of CHERUBS for many years and am aware of all facets of the charity- the volunteers, the members of all 3 boards, and the finances. I am proud to say that CHERUBS is run by a team of wonderfully dedicated volunteers led by the charity's sole employee, the President of CHERUBS, Dawn Williamson. It takes a lot of hours, and people from many areas of the world, and with many talents to serve the CDH community. All of the volunteers that I have come in contact with from State Representatives, to Hospital Angels, to those who work on the various committees, to the Parent Advisory Board, and the Executive Board serve dutifully with professionalism and respect to see that families get the help they need while working to raise awareness of CDH and money to further research that is so desperately needed. From my role as Treasurer, and with continued knowledge of the finances of the charity as an executive board member, I can assure you that every donated dollar is used to the best of its ability to help the cause. Meticulous care is taken to see that donations are spent only in the manner with which the donor specifies (research, family assistance, awareness, etc.), and that money is never wasted. I am proud to count myself as a member of the CHERUBS team.
Cherubs helped me to understand that I was not the only one out there going through a CDH experience. All of the Dr's and hospitals I was treated at had never heard, made me feel like a black sheep. When I came across CHERUBS everyone understood my story, and were there through my grieving process. Amazing charity!!
So far my experience with Cherubs has been wonderful, Dawn, the founder, has such love for all these children and wants to do all she can to help every family. Now with the indroduction of the bill in the senate she has rallied all the CDH community to stand behind it and get more reseach dollars for the babies. I have never seen it be about her but always about the babies and I know that even though they are a small charity they will continue to do GREAT things!!
I have adaughter with cdh and cherubs was there to teach us about the condition, offer us support and even sent us a car package. Without cherubs dealing with our daughters cndition would have been much harder.
When I first learned that our child had been diagnosed with CDH we were at a loss in finding resources for the treatment and general knowledge in trying to prepare for his birth. CHERUBS volunteers were instrumental in preparing us with information and emotional support as we tried ago cope with our sons condition. The general public is as of yet still underinformed about this condition and CHERUBS is slowly but surely changing that. Thank you!
When I found out my unborn daughter was diagnosed with CDH, no one understood what I was going through. Except the other parents on the Cherubs message board. By talking with them I gathered information that was essential to treating my child. I discovered more treatment options and support; ultimately they helped me choose where I came for treatment. My daughter is still in the NICU but expected to make a full recovery and lead a normal life. I have Cherubs in part to thank!
beecause of cherubs I recieved the only info I was to get on CDH while pregnant and during the time of my sons nicu stay. They have helped to access much needed info so i could make the right choices in my sons care. They were supportive to me in finding help to a friend of mine when her undiagnoseed daughter died due to CDH. they make me, and this is thee most important thing of all, feel like I am not alone in all of my struggles.
When I was 5 months pregnant with twins, I was told one of them had a cogential diaphramatic hernia. The physicians gave her a 20% chance of surviving and encouraged me to get an abortion because she would probably have several birth defects and the other twin was at risk for premature delivery. My husband and I had been told we could not have children so abortion was not an option. I turned to Cherubs to learn more about the condition and found support from others who had babies with CDH. We were not sure what we would face in the months to come but Cherubs gave us hope. This organization provided us with the latest research data and connected us with other families close to our area. We had never heard of CDH and we were so scared. I cannot thank Cherubs enough for helping us through the most difficult time of our life. They helped us find specialists in our state and understand the medical procedures that would be required when our daughter was born. She had surgery at 2 days old and again at 4 years old. Cherubs has been my only trusted resource over the years and even today I still turn to the organization to keep up with the latest research. I would highly recommend Cherubs to any family that learns their baby has CDH. It is a long hard road but you will not be alone.
Our daughter was born with CDH and its amazing to have an organization that is all about CDH, finding more information on it, and some where you can talk to parents that have been through the same things you have been through. its wonderful to have such amazing people out there that want to know and find answers as much as we do!! THANK YOU CHERUBS YOU ROCK!
Cherubs helped my family tremendously! My daughter gave birth to a CDH baby at 34 weeks. Chrubs had already sent her a tote bag full of supplies and an invaluable book. The day of my granddaughter's surgery we had the book out and were reading it and looking at the picutres that helped us understand what was going on. Danielle and her husband had already made connections with other parents through Cherubs and were so much more informed and prepared because of the supoort and knowledge they gained from those wonderful families. Cherubs is more than a charity, it is a network of multiple support in so many areas for the parents, grandparents, and siblings. They tirelessly raise awaremess and funds in hope of someday finding the reason for CDH and preventing it. They have worked for years with our representatives in Washington to get funding for research. I cannot say enough about this organization and the work they do.
One year ago, I wasn’t sure if my newborn son Samuel Reis would be alive long enough to leave the hospital and go home with our family.
During my 35th week of pregnancy, I found out that my unborn child had a congenital diaphragmatic hernia, a condition where the diaphragm doesn’t fully form, resulting in the abdominal organs lifting into the chest cavity and preventing proper lung growth. I was devastated and lost, as I knew nothing about this condition. CHERUBS — the Congenital Diaphragmatic Hernia Public Awareness and Support Association was there to provide me with information about CDH and connect me with other CDH families.
Since my son is a CDH suvivor, I have become an active volunteer to help others affected by this birth defect. As a volunteer and member, I have experienced firsthand all the great things CHERUBS does for families impacted by CDH. From support, to financial assistance, to fighting to raise awareness and funds for research, CHERUBS really does a lot with a very limited budget.
I myself am a CDH survivor. When I was fourteen I met a little baby with CDH. The child's aunt had connected with my Mom via CHERUBS while looking for information for her pregnant sister. The day I had been admitted to the ICU for my breathing, the women's nephew had been born and was put into the same ICU. For the two months I was in the hospital I would visit to see how he was doing. His parents told me they enjoyed seeing me and that I gave them hope. Unfortunately, a month or so after I got out the hospital he passed away. But he didn't pass without a fight. Until that point I had never knowingly met another cherub, and if it hadn't been for CHERUBS I may not have met him.
I have a Survivor child that was born in 1987 with CDH. I had trouble finding information about CDH. I could have used all the great help Cherubs provides to families. thanks for this organization....I am trying to help spread the awareness about CDH.
28 months ago we welcomed our Cherub Jayden into the world, and 27 months ago we buried him.
He crashed at birth but fought back, and kept fighting back for 23 days until he could fight no more.
For my daughter the days are long & lonely. There is an emptiness in her heart nothing can fill, and the chances for another baby are so small they are almost nil. She will forever miss her son...
For me as his grandma, it feels like a piece of me is missing, that I have been cheated of the chance to spoil & love him like a grandma should. Endless supplies of pinwheels at his grave are all I can give him now. I will forever miss my grandson...
Please support CHERUBS! They were there for us and so many families in so many way that we are now volunteers helping to advance support of CHERUBS. My daughter is now a Hospital Angel volunteer & I am a Co-Rep for Oregon. We all need to band together & fight to "Save the Cherubs" until we have the answers & someday can keep ANY family has to go through this journey!
Jayden's CDH Story 2/19/10 - 3/14/10
My grandson was diagnosed with CDH at 17 weeks into my daughter's pregnancy with less than a 50% chance of survival. Although our doctors did an excellent job of preparing us for what was to come we still had a ton of questions that only families who have been down the CDH road could really understand & relate to. We found CHERUBS just before he was born and the support they showed was phenomenal after he was born and especially after he grew his wings.
Although we will always grieve his loss the 'family' we have found through CHERUBS will always be dear to our heart and we are proud to support them in getting awareness out about CDH.
Cherubs was an extremely helpful resource when we discovered that our unborn child might have CDH. The statistics, research, and advice was beyond my expectations. Since our son's birth, they have proven to be a wonderful support group, and a blessing.
I learned about CDH the hard way; our son was diagnosed prior to his birth. He survived the delivery, unfortunately he did not survive past his first day. CHERUBS has been a wonderful resource to learn, to grieve, to celebrate, and to just talk (or listen) to others who understand what we are dealing with. CHERUBS provides a strong, meaningful support system that is rarely found.
Twenty weeks into the pregnancy my 1st grandchild was discovered to have CDH. My son and his (wife) lived in the Bahamas where the doctor told them that they had no technology to handle the birth of such a newborn condition. I was beside myself with worry as they tried to find a way to get the baby's mother, Karla, who is Nicaraguan and not yet married to my son, to the US in time for the baby's birth. CDH babies are notoriously known for early births. Karla was not a US citizen, at the time I had no idea that people from third world countries don't get to just come to our country. I was devestated to hear that it could take many months even in emergency cases. I found a fledgling Cherubs site on line and contacted them to see if they could help in any way. Dawn, who at the time WAS Cherubs, contacted a woman who lived in the Bahama's, a mother who lost her first born son to CDH and was well versed in the challenges associated with living there. This wonderful woman moved heaven and earth to get my future daughter-in-law to the United States. She was very well aquainted with "someone who knew someone" and got my son an immediate personal appointment with the US Ambassador. My son and daughter-in-law arrived in Florida not more than 48 hours before my grandson was born. I will forever be in debt to Cherubs, they not only gave me the light of my life, my grandson who is almost six, but a certain amount of accomplishment to a grieving mother in Abaco, The Bahamas, whose son did not die in vane but instead was the strength behind a mother's determined effort to save the life of another baby.
CHERUBS IS A WONDERFUL resource I found out at 18 Weeks that my Baby would be a CDH BABY I new nothing about this they told me that I should look to have a abortion but I was not going to instead I prayed an went home did my own research I knew nothing about CHERUBS AT THIS TIME not until my daughter was about a month,old my friend told me about,it once I went online I was amazed at the wonderful support an stories of all the beautiful Children I am still very new to this my daughter is still fighting every minute of het life i'm grateful to GOD that she is now 4 months survived ecmo twice an still fighting i'm greatful to CHERUBS TO KNOW that i'm not alone an there are children that make it out of this rear birth defect it gives u something to hold on to along with your faith in the lord I pray that they continue to get recognition an continue to do the awesome job that they are doing because they are definitely needed out here.....Thank you again CHERUBS JANELLE.L
After having a CDH baby, undiagnosed, CHERUBS was a life saver. THe CDH journey, alone is a roller coaster and having a beautiful group to help guide/support you through it has been a blessing. CHERUBS will always be apart of our lives. Camden is now 3 and although his CDH journey is far from over, we want to give back to CHERUBS and hopefully be a support to other families.
Cherubs is the greatest tool for anyone diagnosed with CDH. My daughter found out at a 14 week ultrasound that my granddaughter had CDH. Our local doctors suggested to abort the baby!! We went home and starting researching and found Cherubs and realized there was hope and a great support system. From Cherubs site we found Dr David Kay's and as a result I have a 20 month old granddaughter Hailey Grace. Thanks Cherubs from the bottom of our hearts: ) this is a family I forever want to be a part of.
It was in 1999 that I first heard of the horrible thing called Congenital Diaphragmatic Hernia. I learnt that my son, my second child, had lcdh. I made it through those tough times due to my faith and the immense help, advice and prayers I got from Cherubs and all the members there. It was definitely the silver lining during the darkest period of our lives.
I first heard the words "congenital diaphragmatic hernia" at a level II ultrasound when I was 29 weeks pregnant with my first child. We had been sent for the level II because my OB/GYN had seen a "bright spot" on my ultrasound a few weeks earlier and she and the radiologist assumed it was just mucus but she wanted to be sure. From that day on, my life was changed forever. We were given a great prognosis before she was born but afterwards, things were totally different! She was so very, very sick that she (unexpectedly) required the use of life support called ECMO, or extracorporeal membrane oxygenation. We were transferred from Providence, RI to Boston for the use of ECMO. At the time, I felt so alone. Nobody I knew had ever heard of CDH before (neither had I). And nobody, I mean NOBODY I knew had any idea what I was going through. One of my daughter's nurses in Boston had suggested I look into CHERUBS. I had checked them out when I was pregnant but wasn't ready to read stories of non-survivors so I tucked tail and ran the other way. I had no idea at that time that CHERUBS would become my support system, my go-to for all things CDH, and that my CDH peers would become like another family. CHERUBS is not only about statistics, facts, leads to good CDH healthcare or ECMO centers. CHERUBS is about sticking together, supporting each other, and just knowing that everybody "gets it." Not only do they get it, but they're there for you no matter what. I love my CHERUBS family! And three years later, my little miracle may be thriving but I know who to go to for questions or advice. Because they're always there. I'm so passionate about CDH and CHERUBS that I volunteer to help families in my area when they need a shoulder to cry on, someone to vent to, or just to know that someone nearby understands what they're dealing with. Nothing is more scary than having your unborn (or newborn) baby diagnosed with a condition that most people have never heard of. But with CHERUBS, we're there for you. We'll reach out to you to make you feel comfortable and a little more at ease. CHERUBS-The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support. We're all in this together to raise awareness, garner more research, and support each other. There's no other organization quite like this one and I'm so proud to be a part of it!
My son was born with multiple birth defects and one of them was CDH. My son Charlie was 4 months and 10 days old when he passed away from PH in 2008. I HATE CDH AND ALL BIRTH DEFECTS!!
I'm a Beeba (Grandma) to my precious little grandson Ruben Luis who passed away after 5 hours from CDH. I'm so thankful I've joined the amazing people at Cherubs & love helping to support Cherubs & all they stand for. Because of Cherubs I learned all about what CDH is & how it affects so many families. I'd never heard of CDH until 2010 when my daughter at about 20 weeks found that their unborn son would be born with CDH & only have a 50% chance to survive. Those 5 hours were some of the most precious times I will ever have in my life & I'm so glad I was able to have the support from my Cherubs family.
I am a former Neo-natal Respiratory Therapist. Congenital Diaphragmatic Hernia babies scared even the most experienced practitioner half to death. So just now imagine a bundle of joy you have waited on for 9 months has arrived to the world and your bundle of joy is your wost nightmare realized. Cherubs helps those parents become educated, provides support, and teaches advocacy to those who have woken up one day to this terrible birth defect. Cherubs has also given what little money and resources they have to recruit the top specialists in the field to better aide in this mission. Cherubs has operated far too long on a shoe string budget, yet despite that they have managed awareness on Nationally televised dramas, documentary shorts, and even have marched on Washington. If it was in my power to give them the resources they needed to obliterate CDH, I would in a heartbeat ( no pun intended).
I was only 10yrs old when I first learned about CDH. My family was super excited about another baby coming into our family. I was hoping for another sister and my brother was hoping for a brother. I knew something was wrong, when the tech ask my dad to take us out of the room. I had no idea what to think. What seemed like a life time, was only a few minutes. My dad came and brought us back. Mom was crying and now the doctor was in there. The first thing they told us, was it was a girl. I was so excited. But I knew there was a long pause and when my parents did that there was something bad coming. All I recall was that the baby would need a lot of work. I told the doctor I would help and do as much as I could. He smiled and just shook his head. During the rest of my mom's pregnancy, I would help her find information on what CDH was. Before my mom was to deliver, I got to tour the NICU. This was not exactly where I was hoping my baby sister would have to come to. But the place was filled with nurses that understood exactly what these special babies needed. My parents told them that they got their information from CHERUBS. The nurses all smiled and said that thet was the best source of information. My mom delivered my sister, Allison Faith, I got to see her hooked to machines, and even though she would fight a good fight, I stood in that NICU, and knew that CDH needed more awareness. From that day since, I decided that I want to be a NICU nurse. I will be a walking talking billboard, for CHERUBS. I plan on even doing a project in school to raise awareness for CDH. CHERUBS helped my family and I plan on paying it forward. Thank you CHERUBS for helping this family.
I watch as Dawn puts in 50 or 60 hours a week at CHERUBS to help CDH families. She takes phone calls at midnight and answers email constantly even when I ask her not to because she cant stand to not help someone for 5 minutes. The office was in our home until last year so I know exactly how much time and love goes into her work. If you were there in DC during the march to see all the people and be on Capital Hill you would understand. I met families and I saw the difference this charity makes. If you ever stepped into the office you would understand. If someone has a complaint because she missed one email out of thousands or they were asked to donate then they need to get a grip. My wife has done more to help CDH families than anyone else in the world has and she deserves admiration and respect. Stop complaining and donate.
Cherubs has been a God send for me. When I had a son born with congenital diaphragmatic hernia 15 years ago, I found all the information, love and support that I needed from cherubs. I have never known any other charity as loving, dedicated, and as supportive as this charity has been for me. I am so grateful to Dawn for founding this charity, she helps thousands of us everyday. Members from all over the world pull together to provide support for one another. Dawn has worked tirelessly to raise awareness of this devastating birth defect in the most professional and ethical way possible.
When my daughter's 20 week ultra sound showed my grandaughter had a leftsided CDH, we knew nothing about it or what to expect. Then we found CHERUBS. We learned so much and we were offered care and support from others who had been through it. My grand daughter, Brielle's journey ended 16 days after her birth, but ours continues. We support all the work that CHERUBS has done to create awareness and seek research. We offer support and prayers to other families just starting their journey. Our family, just like so many others, want answers. Without awareness there is no caring, no desire to find a cause. Without a cause there is no cure, no help for these innocent babies. CHERUBS is fighting for research on behalf of all the babies.
I am a volunteer at the cherubs office and have gotten to see first hand all the good they are doing from sending tote bags and packets to being readily available for members via any contact method to answer questions and concerns. I have also had to see the side pf CDH that has givin me a reason to spread awareness...I hate having to send out greiving parent packets and seeing the word non survivor. I thank Cherubs for all the good they do and hope because of the awareness they are raising more research will be done so we all see more survivors!
I am a mother to a CDH angel. In 2011 just a few days after my son Silas' diagnosis in June at 20 wks I attended the annual conference for CDH which just happen to be in Florida this year (2011). My husband & I were panicked, heart broken, & lost. We showed up the last day & yet got welcomed w/open arms. Its funny because I called the number & spoke to Dawn. They had me on the phone w/Dr Shands right then & there after they heard our story. Since that day I have spoken to MANY Cherubs members. I got cards after the conference, emails, prayers & well-wishes. I have called Dawn hysterical at times & only gotten vm & quickly got a text back or a call to talk me through my episode. I have helped them in many ways such as talking to politicians, get a bill board campaign opportunity for the Cherubs & sent her my pics & video's of our sweet Silas to help raise awareness. Cherubs gave me hope when I needed it & answers too.. Thank you Dawn & Cherubs..
When my family went with me to have our ultrasound done on our 4th child, we could tell by the tech's face it was not good. September 2006 we became crushed to learn about CDH. While some thought it was best to just terminate, we seeked out other families that had been in our shoses. We found the CHERUBS online, and found it was full of so much information, that we shared it with our family. It gave us all a better understanding of what we would be facing after delivery. We were better informed by the information that CHERUBS gave us, then some of the information the doctors gave us. Although we fought a great fight, our journey ended 7 hours later after Allison Faith, came into this world. We have not left CHERUBS, we now supply love and support to all families facing the unknown, and to those that will fight and win, and sadly to those that fight and still lose. CHERUBS will be a forever part of my family. Thank you CHERUBS for all that you do!!
I love this charity so much I volunteer to help others as I was helped. When I first found out of my daughters condition I went to CHERUBS for information whether it was what I wanted to hear or not it was what I needed to hear. The doctors had already given us the grim news of my daughter's condition and what her future could be like as well as worse case scenario. I am a realist. So when I went to CHERUBS I looked for the worse case scenario and found myself crying for all the babies who had grown "wings". I turned off the computer I had seen what I had needed to at the time. Once my daughter made it out of the NICU quicker than what the doctors expected I found myself at home caring for a baby with several lasting effects from CDH. No one in my rural area could give me any "helpful" advice in dealing with my daughter's condition. Let alone understand what I was going through. No one but another CDH parent could help me now. I remembered CHERUBS and the long list of families that are members and volunteers. Someone there had to know how to help me. By talking with the other parents I have helped my daughter have the best life possible with this condition. I go to them first with any concern or triumph. We exchange current and new therapies being used to help our kids. We are all connected and share in the fight against CDH. We gather and discuss improvements made and research being done to find the cause. We know the answer is most likely simple if we could only see it. But we can't and there in lies our dilemma. Do we give up or keep fighting? I choose to "Fight like a CHERUB" I thank God everyday for Dawn Williamson. Without her will to fight I and many other parents would not have the knowledge needed to ease our child's suffering. Thank you Dawn I am proud to wear the ribbon you created so lovingly from the design of Shane's nursery. Keep it up you are doing an awesome job!
Cherubs is desperately trying to help save our babies lives. With little money for research and having the awareness of Congenital Diaphragmatic Hernia next to nothing we struggle every day doing what we can to get information to expectant families. 50% of the babies don't survive which is why I believe this sad diagnosis is unheard of. I believe that any help offered our charity will be taken with thankful hands. We are so grateful for any support offered to our members.
My son Aidan was born on June 6, 2006 with severe LCDH. On June 18, 2006 Aidan earned his angel wings. It took me many years of grief and sorrow until I finally found Cherubs. All I can say is thank God I found them. I have finally, years later begun to heal by helping other families walking the same path I faced alone with my husband. Dawn is not only the head of Cherubs, she is a friend and a support system for so many. I don't know where I would be without the love and support of these amazing people.
I was a member of Cherubs and will have NOTHING to do with this organization ever again. It is nothing but drama. If you say something that Dawn doesn't like you get censored and warned like a child. She is very selfish and everything revolves around her. Cherubs is constantly asking for money and donations and yet you never see the money leaving the organization or people being helped. When I first found Cherubs I was desperate for answers. I scoured the website and found nothing but dead ends. I tried emailing numerous times and got NOTHING. It wasn't until I started finding people on Facebook that I was able to get answers. Sadly it was accompanied by drama. Dawn doesn't let Cherubs members do any other kind of fundraisers for groups that aren't Cherubs. She has gotten mad at Moms for starting their own non-profits in memory of their deceased loved ones, raising money for March of Dimes, doing fundraisers to help other CDH families and lots of other fundraisers. If money isn't being raised for Cherubs than it isn't "right." They are also good at bullying and being mean to other organizations that don't help them win money. Ask any Team SF member about the Vivint contest. Nothing but hatred and bullying coming from Cherubs members. I will never support this group and encourage others not to support it also. Once you open your eyes and really realize what goes on you would be appalled.
We just asked for reviews on CHERUBS Facebook fan page so you must have read our request there. Thank you for being a fan. :) I wish you had signed your real name so we would have an idea who you are and what your issues are so we could respond. Or if you had called, emailed or otherwise contacted myself (Dawn) or any other Board Members to help resolve your issues. Unfortunately, posting anonymously about things that are untrue (as our 17 years as a charity and helping others start their own non-profits reflects and support of 4000+ families has shown) is not constructive. I am sorry that you feel unsupported and that your opinion of our charity is negative based on misinformation you received via Facebook. If you would like to talk about your issues, you can call 919-610-0129 or you can reach any of our Board at firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com or myself at firstname.lastname@example.org We wish you all the best on your CDH journey and are here if we can help in any way. http://www.cdhsupport.org