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65 Reviews
1234.25
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August 2, 2013
3 people found this review helpful

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August 2, 2013
3 people found this review helpful

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!

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When was your last experience with this nonprofit?

2013

July 31, 2013
4 people found this review helpful

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July 31, 2013
4 people found this review helpful

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.......

Ways to make it better...

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

If this is an elected board of directors, they need to find someone as a spokesperson who has even a shred of compassion and apathy then the current ego driven person currently addressing the public.

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Will you volunteer or donate to this organization?

No

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

None

When was your last experience with this nonprofit?

2013

July 28, 2013
3 people found this review helpful

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July 28, 2013
3 people found this review helpful

My wife and I just buried our only child. Instead of receiving support from this organization my father has been attacked because he gave his professional review of this charity. You are gravely mistaken in your assumptions and have no right to attack him or anyone else. How could you behave in this manner at the worse time in our lives? Please stop emailing our family with your insane accusations and leave us to grieve in peace.

Ways to make it better...

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

Close the doors to this organization.

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Will you volunteer or donate to this organization?

No

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

None

When was your last experience with this nonprofit?

2013

July 27, 2013
3 people found this review helpful

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1 previous review
September 25, 2012

My son had CDH, I found this sight 2 months after his birth and it's so great to know that others go through the same things and that gives us hope. more

July 27, 2013
3 people found this review helpful

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.

Ways to make it better...

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

Do nothing.

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

September 25, 2012

My son had CDH, I found this sight 2 months after his birth and it's so great to know that others go through the same things and that gives us hope.

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?

2012

July 27, 2013
1 person found this review helpful

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July 27, 2013
1 person found this review helpful

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.

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 27, 2013
2 people found this review helpful

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July 27, 2013
2 people found this review helpful

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

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 26, 2013
4 people found this review helpful

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July 26, 2013
4 people found this review helpful

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.

Ways to make it better...

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

Bring on more experience professionals.

More feedback...

Will you volunteer or donate to this organization?

Unlikely

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

A lot

When was your last experience with this nonprofit?

2013

October 2, 2012

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October 2, 2012

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.

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?

2012

September 19, 2012

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September 19, 2012

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

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?

2012

June 17, 2012

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June 17, 2012

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.

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?

2012

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