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June 30, 2011

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June 30, 2011

I was looking for help to get my granddaughter a movement moniter for her bed as she has seizures at night. The moniters are too costly for us to be able to buy one outright and The Dannydid foundation purchased one for her and had it shipped to us at no cost to us. They have truley been a blessing.

The Great!

I've personally experienced the results of this organization in...

my own life. we can sleep better knowing that when she has a seizure we will be alerted to it.

Ways to make it better...

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

help them more so they can help others.

June 30, 2011

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June 30, 2011

Almost one year ago, I heard Mike Stanton share the story of his son, Danny, who died tragically from epilepsy. Mr. Stanton then went on to explain how this awful event led to the creation of The Danny Did Foundation, which seeks to raise awareness of epilepsy, S.U.D.E.P., and ways to monitor for nighttime seizures. After the speech, I told Mike Stanton about my own daughter, Lily, who also suffered from epilepsy, and The Danny Did Foundation donated an Emfit, a device that monitors for nighttime seizures. The Danny Did Foundation did not want Lily to suffer as Danny did. Now, it's almost as if Danny is watching over Lily each night as she sleeps.

The Great!

I've personally experienced the results of this organization in...

See above.

Ways to make it better...

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

Continue to spread the word.

June 29, 2011

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June 29, 2011

My 11 year old Son Brynnon suffers from Epilepsy and Borderline Intellectual Functioning. I stumbled upon Danny Did while doing research for my Son's outcome. I was horrified to learn about SUDEP, especially since none of the Physicians that we had seen had ever mentioned it to us. I was told over and over again that having a seizure while sleeping is not common and would not happen again after his first that we saw in early 2009. After learning about SUDEP from The Danny Did website I started staying up at night to watch him sleep. It was realized then that he was having an average of 3 Grand Mal Seizures a night and countless myoclonic seizures. I started sleeping with Brynnon and our infant on the sofa bed fearing that he would have a seizure and no one would be with him. I contacted Danny Did and spoke with Tom Stanton. I explained that we are a one income Home School Family and could not afford the EMFIT Seizure Monitor. He was very informative and said that they would like to send us one. My Son, My baby and I have been happily sleeping in our own beds since.

The Great!

I've personally experienced the results of this organization in...

Danny Did is a wonderful organization and so many have been educated about SUDEP and Epilepsy through them. I could never thank them enough for the help with our Son, at a time when we felt so helpless. They are tirelessly working to educate so many about SUDEP.

Ways to make it better...

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

Give them more funds!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

I found Danny Did while searching the web about my Sons condition.

What, if any, change in your life has this group encouraged?

Danny Did gave us peace of mind, knowing that we are doing all we can do to prevent SUDEP in our Son.

When was your last experience with this nonprofit?

2011

June 29, 2011

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June 29, 2011

I dont know where we would be without the Danny Did Foundation. Almost 2 years ago ym daughter was diagnosed with Epilepsy at the age of seven. During our hospital stay and since with her neurologists, we were never told of SUDEP. We had no clue such a real and scary thing existed. Thanks to the Danny Did Foundation we were able to get informed and they even went as far as helping us financially obtain (based on our financial need) an Emfit movement monitor so that we can be alarmed if she has seizures at night. For monthes after she was diagnosed I slept on her floor terrified that she would have a seizure at night without me knowing and since the Danny Did Foundation came into my life, I sleep so much better. Not only have they helped me out in the way in which I just explained but they have warmed ym heart and made me feel like a part of the family. They actually care about me and my daughter and do it all in the name of their sweet boy that they lost. I have recently volunteered for the Foundation, speaking at a local Epilepsy conference and getting the word out on their behalf. I hope to continue to do more volunteer work, it is the least I can do for such an amazing group of people!

The Great!

I've personally experienced the results of this organization in...

Obtaining an Emfit movement monitor and crucial information ahout my daughters disease.

Ways to make it better...

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

do nothing. Not only are they full of knowledge about SUDEP and Epilepsy and nto only did they help me with obtaining an Emfit movement monitor, they made me feel like a part of the family and made sure that my daughter was ok. They care so much for people and that is not something that can be taught.

June 29, 2011

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June 29, 2011

Our oldest son was diagnosed with a seizure disorder several years ago. We contacted Danny Did for more information for an Emfit device and received one within days. The device detects nocturnal seizures and does an amazing job. The prompt and positive experience is highly unusual but so greatly appreciated. The device has notified us 4 times of our sons seizures and possibly saved his life.

The Great!

I've personally experienced the results of this organization in...

This organization is extremely prompt and has a sense of urgency. They are organized and professional with a human touch.

Ways to make it better...

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

This organization is prompt and professional. It would be wonderful if all ogranizations could duplicate Danny Did.

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