Morgan Amelia Foundation

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About This Cause

Our daughter Morgan Amelia was diagnosed with Dravet at 8 months of age. We have experienced first hand how incredibly important early diagnosis and alternative treatments are to change the outcomes of Dravet children. Morgan's seizure disorder is managed with a strict daily routine, special diet and Cannabidiol, a form of medical marijuana. The foundation was started to raise awareness and improve the lives of all Dravet children.


Dravet Syndrome is a severe rare form of epilepsy that affects children and is resistant to medication. Seizures typically begin in the first year of life and increase in intensity during ages two to four. They will develop all types of seizures, usually different than the previous and can be life threatening. Sadly, every year several children are losing their battle with this terrible disease. There are only approximately 500 US cases of Dravet. Many Dravet children suffer hundreds of seizures a week, even on anti seizure medication. The risk of seizure is constant in their daily life: over stimulation, sleep deprivation, slight temperature increase or decrease, food triggers, chemical trigger, and any change of daily routine.


Your donations will help to provide medicine, seizure monitors, special needs car seats, in home nursing care, and dietary education. The medicine for these children that is showing the best results are not easily accessible and very expensive-- the average cost is $1000 per month per child. Seizure monitors need to be in the child's bed for nocturnal seizure alert-- the cost of these monitors are $600 and not covered by insurance, or if they are it takes months to get approval. Special needs car seats are necessary for many children who are unable to use a standard car seats due to their condition. Most parents are unable to work due to their children's seizure status, many Dravet children have hundreds of seizures a week and the medication given to stop a seizure is a heavy benzodiazepine, which can stop their breathing. For this reason, in home nursing care is necessary so the parent can run everyday errands. Lastly, diet is very important in Dravet children with controlling seizures--a high protein, high fat, low carb diet has proven to be most effective. However, the parents need to be educated in providing such a diet to a child as there are special ratios to follow.


We ask for your help in beating this devastating disease and to give children and families hope, love and support.

+Hide - Recent Posts
  • Christina Schniegenberg
    2013-09-24 16:48:25

    The Morgan Amelia Foundation page is now up! We need your help to make a difference.

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CREATED BY:

Christina Schniegenberg

Contact me
We are Morgan's parents and are asking for your help to raise awareness and provide assistance to Dravet children and families throughout the US.
  • $ 50
    MARILOU Majewski
    1 month

    In memory of David Ernest Snyder Sr.

  • $ 100
    Gordon/Betsy Stevenson
    4 months

    GO you girls, Delilah and Cynthia (and of course Josh). We wanted to support Cynthia especially in the race but blew it, so we are doing it now. Keep up all the good work, and thanks for making a such big difference. Grampy and Grammy

  • $ 100
    Phillip Blanke
    1 year

    No Comment

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DonationTo has helped people all over the world raise millions of dollars. DonationTo specializes in helping individuals raise money for medical bills, memorial expenses, funeral costs, marathons and more. Create your online donation website with DonationTo!
Morgan Amelia Foundation

Share This Campaign

About This Cause

Our daughter Morgan Amelia was diagnosed with Dravet at 8 months of age. We have experienced first hand how incredibly important early diagnosis and alternative treatments are to change the outcomes of Dravet children. Morgan's seizure disorder is managed with a strict daily routine, special diet and Cannabidiol, a form of medical marijuana. The foundation was started to raise awareness and improve the lives of all Dravet children.


Dravet Syndrome is a severe rare form of epilepsy that affects children and is resistant to medication. Seizures typically begin in the first year of life and increase in intensity during ages two to four. They will develop all types of seizures, usually different than the previous and can be life threatening. Sadly, every year several children are losing their battle with this terrible disease. There are only approximately 500 US cases of Dravet. Many Dravet children suffer hundreds of seizures a week, even on anti seizure medication. The risk of seizure is constant in their daily life: over stimulation, sleep deprivation, slight temperature increase or decrease, food triggers, chemical trigger, and any change of daily routine.


Your donations will help to provide medicine, seizure monitors, special needs car seats, in home nursing care, and dietary education. The medicine for these children that is showing the best results are not easily accessible and very expensive-- the average cost is $1000 per month per child. Seizure monitors need to be in the child's bed for nocturnal seizure alert-- the cost of these monitors are $600 and not covered by insurance, or if they are it takes months to get approval. Special needs car seats are necessary for many children who are unable to use a standard car seats due to their condition. Most parents are unable to work due to their children's seizure status, many Dravet children have hundreds of seizures a week and the medication given to stop a seizure is a heavy benzodiazepine, which can stop their breathing. For this reason, in home nursing care is necessary so the parent can run everyday errands. Lastly, diet is very important in Dravet children with controlling seizures--a high protein, high fat, low carb diet has proven to be most effective. However, the parents need to be educated in providing such a diet to a child as there are special ratios to follow.


We ask for your help in beating this devastating disease and to give children and families hope, love and support.

CREATED BY:

Christina Schniegenberg

Contact me
We are Morgan's parents and are asking for your help to raise awareness and provide assistance to Dravet children and families throughout the US.
+Hide - Recent Posts
  • Christina Schniegenberg
    2013-09-24 16:48:25

    The Morgan Amelia Foundation page is now up! We need your help to make a difference.

  • $ 50
    MARILOU Majewski
    1 month

    In memory of David Ernest Snyder Sr.

  • $ 100
    Gordon/Betsy Stevenson
    4 months

    GO you girls, Delilah and Cynthia (and of course Josh). We wanted to support Cynthia especially in the race but blew it, so we are doing it now. Keep up all the good work, and thanks for making a such big difference. Grampy and Grammy

  • $ 100
    Phillip Blanke
    1 year

    No Comment

Use Facebook to leave a comment below
LEAVE A COMMENT

NOTHING gets posted to your wall. Only your Facebook name & photo are used.

What is DonationTo?

DonationTo has helped people all over the world raise millions of dollars. DonationTo specializes in helping individuals raise money for medical bills, memorial expenses, funeral costs, marathons and more. Create your online donation website with DonationTo!
 
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