Breath of Hope Inc.
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I am the parent of a child born with CDH. I've seen this organization grow from just a few parents sharing experiences through a Yahoo group to the wonderful supportive organization it is now. Breath of Hope, Inc. has done a tremendous job of raising awareness of this little known birth defect. BOH is tremendously supportive of families facing this diagnosis and gives them a place to come for information and support. BOH has raised money that has been specifically earmarked for CDH research.
The Great!
I've personally experienced the results of this organization in...
BOH has been a source of support for me, even though my child is older.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
When our family discovered that our grandbaby had CDH, Breathe of Hope was a source of comfort and support to my daughter-in-law and she and my son sought the very best of medical care for the delivery of the baby, traveling far from home for months prior to his birth. Little William lost his fight for life, and Breathe of Hope was with us in our grief as well as the anxiety we felt for months prior to his birth. God bless this organization. It has done much to enlighten others about CDH and to support families during their period of trial.
The Great!
I've personally experienced the results of this organization in...
counseling and supporting our family which lost a beautiful CDH baby boy who was perfect in every way except for this devastating birth defect.
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How frequently have you been involved with the organization?
One time
When was your last experience with this nonprofit?
2008
It wasn't until after the death of my son, Joey, in November 2007 from a LCDH that I felt I needed additional support to deal with the loss. Thank goodness for Google. I found Breath of Hope and they almost instantly became family. They were so attentive to my needs and my grief and have been with me all the way through. Through my loss I feel blessed to have found BoH.
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The Great!
I've personally experienced the results of this organization in...
fundraising and donations, bringing so much awareness of the birth defect to countless people. Learning that by spreading awareness that more people than I knew have been affected and need the support that I have.
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How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
We found out at an ultrasound that our daughter, Baylee had CDH. Despite having worked on a Women and Children's Unit at a local hospital I had never heard of CDH. I went home and searched the internet to try to understand what CDH was. There is very limited up to date information on CDH. I found Breath of Hope and they were my lifesavers. I joined the forums and found immediate support from people who were in my shoes and have lived through what was happening to us. I am so grateful for all the great support I received from BOH. They were there even if I just needed to vent. It means so much to me that they "know" Baylee. They validate her life even if it was very short. BOH is a wonderful organization and I really appreciate all the support.
The Great!
I've personally experienced the results of this organization in...
I have received unlimited support and accurate information. That is very helpful because CDH is very often unheard of and forgotten.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
Our daughter Serendipity was born with CDH but we didn't find out until much later then most. She needed surgery right away once it was found and BOH provided me with so much information. There is very little published and it all goes back to the same sites, nothing new. BOH was able to give me information and it was so appreciated to be able to read other peoples stories. I am forever thankful for the support I have recieved from them. Mel
The Great!
I've personally experienced the results of this organization in...
I have recieved so much support from everyone and not just with Serendipity but in my later pregnancy as well. They have been amazing.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
When I found out that our son Cadan had CDH, Breath of Hope provided me with support and answers where there were no answers. After we lost Cadan, they have continued to be there for me whenever I need support. I would have never made it through this experience without them. They gave us an idea of what to expect before and after Cadan's delivery and were there every time I was about ready to lose my sanity. I owe so much to this organization and I want others to find out about Breath of Hope. Breath of Hope gives you hope in what feels like a hopeless situation.
The Great!
I've personally experienced the results of this organization in...
many ways. During our pregnancy, while in the hospital with our son and after we lost our son.
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What I've enjoyed the most about my experience with this nonprofit is...
The help and support I experienced during and after our CDH diagnosis.
If this organization had 10 million bucks, it could...
save thousands of babies from suffering and dying from the Congenital Diaphragmatic Hernia birth defect by giving that money to CDH research - which is so desparately needed for a birth defect that is all too common yet relatively unknown.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
My son was born with CDH. I heard about Breath of Hope from the social worker at UCSF. Breath of Hope has many families going through the same thing, and it's nice to know that you aren't alone. It's also great to be able to give advice to new parents who are just coming into this whirl wind of an experience and give them hope and encouragement. This organization also influenced me to go out and get Congenital Diaphragmatic Hernia Awareness day a proclaimed day of awareness in the city I live in.
The Great!
I've personally experienced the results of this organization in...
I joined this group when my son was diagnosed with Congenital Diaphragmatic Hernia.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
My son was born with CDH and without the love, kindness and support of Breath Of Hope I don't believe we would have made it through wihtout it. They were a tremendous support not only with kind words of encouragement but they had all been through the same thing we were going through. They do amazing work in the areas of not only support, but funding research and the most important area which is simply awareness. Many people have no idea what CDH is until diagnosis, this organization is getting the word out so that more are aware of this life threatening birth defect.
The Great!
I've personally experienced the results of this organization in...
Not sure how to answer this. They personally helped me in dealing with my son's diagnosis and subsequently his recovery and continued struggles.
Ways to make it better...
If I had to make changes to this organization, I would...
the only change I would make would be to make more people aware of this organization.
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What I've enjoyed the most about my experience with this nonprofit is...
The warmth, love and support from its many members
The kinds of staff and volunteers that I met were...
always caring, always ready to listen and help when they could. They also knew when just to let someone talk/vent
If this organization had 10 million bucks, it could...
WOW, it could do amazing things, it could spread awareness and help fund more research and best practices for people working with babies born with CDH. More people would know about Breath of Hope which is so powerful due to its many members and their supp
Ways to make it better...
I could meet with these women face to face just to thank them for everything
In my opinion, the biggest challenges facing this organization are...
more funding for awareness campaigns, more funding for scholarships and research
One thing I'd also say is that...
They are unique in their make-up, it isn't the "board" its all members who work together to support each other and spread awareness in each community.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
My nephew was born with CDH and passed away, but the support and guidance Breath of Hope gave my sister and brother-in-law is absolutely unsurpassed. This organization was the only one oout there helping and full of information.
The Great!
I've personally experienced the results of this organization in...
Seeing many families affected by CDH have someone to guide them and offer support.
Ways to make it better...
If I had to make changes to this organization, I would...
Have offices in every state! Grow, Grow, Grow!
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What I've enjoyed the most about my experience with this nonprofit is...
that families have someone to lean on.
The kinds of staff and volunteers that I met were...
Awesome!!
If this organization had 10 million bucks, it could...
Advertise to raise awareness and fund research.
Ways to make it better...
If Breath of Hope were a larger organization.
In my opinion, the biggest challenges facing this organization are...
Money.
How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
I will never forget the day that I received a care package from Breath of Hope. My son was about 16 days old and fighting for his life. He was born with a congenital diaphragmatic hernia and we received so many thoughtful items in our care packages. I was so excited to put on my awareness bracelet, ribbon, and car magnet in support of my son's fight. Included in the package was a sealed envelope that said 'Open only in the event of and Angel.
Photos
The Great!
I've personally experienced the results of this organization in...
supporting me, answering my questions, and allowing me to grieve the death of my son in the way that I need to without judgement. Breath of Hope was there for me not just when my son was fighting for his life, but through my darkest hours grieving for him
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If this organization had 10 million bucks, it could...
do so many things for babies and families that have been affected by congenital diaphragmatic hernia. I believe that through awareness and research we will find a cure, and Breath of Hope will lead us there.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
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