We lost our baby to CDH last year. And since then we have spoked to many organizations/charities yet none have been as heartfelt as BOH. When Elizabeth says she is there for you she means it. The warmth felt through our conversation is indescribable. Her support is unmatched. We had approached other nonprofits with ideas to help educate the public and each said no. But at BOH their belief is the more noisy wheels out in the world the better. They want as many people as possible to help spread the word of CDH. Each organization has there own agenda. But at BOH they really do care about each family. We not only received a care package but Elizabeth actually sent us a hand painted care box for our son. No other organization went to this limit. The community of BOH members also seem to be just as kind. We have established some great relationships with families through this community. Thank you Elizabeth and all the hard workers of BOH you have done so much for us. The Frias'
Breath of Hope and Cherubs were both there for me when I was pregnant with our daughter. I tell everyone to go to them and Global CDH for support along with other groups on Facebook. The best way to get through a CDH pregnancy is support! The more the better! Breath of Hope still continues to give us support! Thank you!
I have never been more disgusted with any "not for profit" organization that that of Breath of Hope. While on the surface when you first "walk in the door" they seem to genuinely care, but you soon realize that the person who runs this is extremely opinionated and harsh when your opinions do not coincide or run parallel 100% with hers.
Her attacking banters back and forth are hard to grasp or come to terms with. We in this group are dealing with heart wrenching life and death situations and her bullish mannerism is most uncalled for. My personal opinion is that she seems to become out of control with persons (and it is not just me, I have seen it for months) who belong to other support groups instead of just "belonging" to her.
We as parents (and our families) look for resources in many different avenues as we seek answers, support and help. We should have the right to seek any and all information from as many resources as possible without feeling ostracized or being accused of not being 100% loyal to BOH. I have free will and like all American's there is no one charity that owns any one person or group of people.
I have read RobertH's post and could not agree more, his post validates the eccentric behavior witnessed and while I know I will undoubtedly feel the same wrath and backlash as RobertH and his family did - I refuse to sit back and say nothing and allow others to fall prey to quirky outlandish statements in such a vulnerable time in any one person's life.
There is no place in the world of sick or dying babies for huge EGO driven personalities. Would I ever recommend BOH to another CDH expectant mother??? No way, I have had it with the "leader" of this pack.
Fed up and disgusted in Alabama.......
bizclinton, You never had an experience with our organization, nor did RobertH nor Grandpop, so how can we take your or their "reviews" seriously? We can identify all the reviews that are 4 or above stars as individuals that have used our services and programs. When we have sent private messages, we have asked them to directly contact us - and none have to partake in some sort of positive dialog to either improve services or obtain information. Breath of Hope is run by our Board of Directors and our families - all volunteers. We have no paid employees and Breath of Hope is not about one family but all our families. We also encourage families to get support from where they feel best. We also refer families to several other groups and nonprofits and promote those nonprofits causes who help.
I found BOH a Couple months after my son was born with CDH. This was by far the scariest time in my life,just a year before my good friend gave birth to a CDH angel. I had no idea what to expectand was very worried about what the future might hold. Thanks to all the info and loving community I finally found some comfort in knowing that we weren't alone in this battle. I have never found a more helpful organization and I am so thankful to BOH for all their support.
I found out my son was gonna be born with CDH when I was pregnant I researched it and ended up finding BOH. It was so amazing finding them. They gave me the best support through it all and they actually cared about how he was doing. I also made some great friends through this journey. I believe they are the best support group for CDH.
My baby cousin Jackson passed with CDH this year, when i found out the founder of BOH had visited my cousin and her husband during their 4 month stay with their baby boy in UVA i was very touched. I love all of her post on the BOH page, you can tell she genuinely cares about each and every child on her page
My grandson died of congenital diaphragmatic hernia last week and I came to here to search for a charity to donate to. I am on the board of a trust and we are researching foundations to donate to in memory of him.
I suggest to you to make your financials more transparent. It was alarming to see that your foundation does not upload any financial paperwork on Guidestar and it appears that you have never been audited. Looking at your 990 given by the IRS it was more alarming to see where money is spent and the percentage of overhead. No donor wants to see such a large amount to go to legal fees or to see that your donations are drastically declining.
In good conscience I cannot recommend your charity for a donation. As a grieving grandfather this is very upsetting to me. I hope that my pointers will help you to attain a more professional level in the future.
Our Board consists of individuals who have decades of experience with CDH and nonprofits. One of our board members oversees three Trust Funds which are audited annually. We do not see it is cost effective to pay for an audit of our finances when each dollar is accounted for. All of our 990s are available we submit our forms on time each year. Legal fees, $12,500.00 for 9 years - that is pretty good for a nonprofit many pay that a year or more. If we paid that for an audit, would that be acceptable? That is probably what it would cost. Perhaps you should email us at firstname.lastname@example.org for more information, we would be glad to give you our annual reports - we don't file them consistently on Guidestar because Guidestar is looking for it's own revenue. Guidestar is just a repository of nonprofit info. And we are a Bronze Level only because we have never had an audit. Further this, Breath of Hope is the first organization to have donated to CDH Medical Research, we have always filed a 990 Form, even when we were not required to do so. You have not contacted us directly so your review is questionable. It is quite obvious - please see the link for Grandpop's reviews one right after another: http://greatnonprofits.org/users/profile/217290
My son died from CDH. I didn't know what it was or anything about it. After he passed I began looking online for information about this defect. I came across Breath of Hope and I couldn't have been happier. Elizabeth was very comforting and welcoming. I didn't feel awkward putting my story or my feelings out there because I knew all the people on there have lost children or have children with this defect that stole my son from me. I can vent any day of the week, any hour and I will always get a caring response. BOH has definitely changed my life and has helped me get through the grieving process. They are very informative. I wish I had them from the first day I was told my son had CDH.
My son was born with CDH he has overcome many obstacles. And he is age 9 !!!!! This group is nothing less than amazing and super supportive
My son was born with CDH in December of 2011. Thankfully he was a fighter and pulled through and is now a healthy 6 month old! Many other babies are not as lucky though and this charity is a wonderful way to bring awareness.
I came to learn about Breathe of Hope after my daughter was diagnosed and died from a congenital diaphragmatic hernia. I met Elizabeth who took me under her wing and helped me through my first year of grief. It has been long and hard road, but breathe of hope helped me see the light, especially Elizabeth!! They are awesome and have something helpful for all kinds of families that are dealing with CDH. Mine however happened to be that I am a Mom of an Angel and they were able to be there for me when I needed them most!!
After having experienced other CDH groups I find BOH refreshing! :) Elizabeth always has positive things to say to other CDH families and never bad mouths anymore. She encourages members to help other people and spread awareness. BOH is not about 1 person, it's about the whole group.
Awesome group of people who offer support, advice and prayers. A group that you can share your child's story and experiences or updates of your child because they have experienced it or they have a family member who is a CDH hero.
My son was born with CDH in May of 2009. Before he was diagnosed in the womb, we had never heard of CDH. The internet is full of very negative and heartbreaking information that did not allow us much hope while preparing for our sons arrival and the journey through a very scary time in our lives. The NICU nurses at the hospital pointed us in the direction of Breath of Hope and I have been following and looking to them for guidance ever since. Not only has BoH serves as a great source of information about Cash's early battle with CDH, but also continues to help me feel comfortable and make decisions about things such as shots, doctors appointments and just general support of other parents who have gone through similar circumstances. I will always be grateful to them for being our Breath of Hope!