Re: Sad news - Sara and Daisy

[Guest guest]

Hi ,

that news is very sad. I have never seen posts from Sara and Daisy(before my

time?)

I did not know severe myoclonic epilepsy could cause death?How?

How old was Daisy, sorry I never got to know them,

Nicola in the UK

[Guest guest]

Hi ,

that news is very sad. I have never seen posts from Sara and Daisy(before my

time?)

I did not know severe myoclonic epilepsy could cause death?How?

How old was Daisy, sorry I never got to know them,

Nicola in the UK

[Guest guest]

Hi ,

that news is very sad. I have never seen posts from Sara and Daisy(before my

time?)

I did not know severe myoclonic epilepsy could cause death?How?

How old was Daisy, sorry I never got to know them,

Nicola in the UK

[Guest guest]

I didn't know them, but am very sad for them.

As for myoclonic epilepsy having a very bad prognosis, I hope that's

not always the case. My son has myoclonic seizures of unknown origin,

and I was devastated when I read your statement. All children are

different, and I can only pray that 's outcome won't be similar.

Meredith

> For those of you who remember Sara and your little girl Daisy from

the

> UK, just wanted to let you know that Daisy passed away on Tuesday.

Daisy

> had Severe Myoclonic Epilepsy which has a very bad prognosis. But

her

> mom and Dad spent all of Easter weekend with her doing family things

> (the bizarre part is she was doing really well just before this

> happened) and Sara and Daisy had a wonderful day together on Monday.

>

> Sara has a very vivid beatiful way with words (you wouldn't have

seen it

> on this list but in the Cafe she can transport you to a meal she is

> cooking or her garden in an amazing way) and her posts about Daisy

about

> absoloutely heart-breaking.

>

> Anyway, thought I should pass it on for those who knew them. The

funeral

> is Tuesday. Please keep Sara and in your prayers

> , 's mom

[Guest guest]

I didn't know them, but am very sad for them.

As for myoclonic epilepsy having a very bad prognosis, I hope that's

not always the case. My son has myoclonic seizures of unknown origin,

and I was devastated when I read your statement. All children are

different, and I can only pray that 's outcome won't be similar.

Meredith

> For those of you who remember Sara and your little girl Daisy from

the

> UK, just wanted to let you know that Daisy passed away on Tuesday.

Daisy

> had Severe Myoclonic Epilepsy which has a very bad prognosis. But

her

> mom and Dad spent all of Easter weekend with her doing family things

> (the bizarre part is she was doing really well just before this

> happened) and Sara and Daisy had a wonderful day together on Monday.

>

> Sara has a very vivid beatiful way with words (you wouldn't have

seen it

> on this list but in the Cafe she can transport you to a meal she is

> cooking or her garden in an amazing way) and her posts about Daisy

about

> absoloutely heart-breaking.

>

> Anyway, thought I should pass it on for those who knew them. The

funeral

> is Tuesday. Please keep Sara and in your prayers

> , 's mom

[Guest guest]

Oh - I'm so sorry to hear this. Daisy started the diet around

the same time that did. This hits us all at the root of our hearts.

Our babies are so precious, and so fragile - I pray I never take another

day for granted. Could you privately send me Sara's email so I could

send her a note.

Thanks

Kathy - 's Mom

On Fri, 16 Apr 2004 08:50:46 -0300 mmc@... writes:

> For those of you who remember Sara and your little girl Daisy from

> the

> UK, just wanted to let you know that Daisy passed away on Tuesday.

> Daisy

> had Severe Myoclonic Epilepsy which has a very bad prognosis. But

> her

> mom and Dad spent all of Easter weekend with her doing family

> things

> (the bizarre part is she was doing really well just before this

> happened) and Sara and Daisy had a wonderful day together on

> Monday.

>

> Sara has a very vivid beatiful way with words (you wouldn't have

> seen it

> on this list but in the Cafe she can transport you to a meal she is

> cooking or her garden in an amazing way) and her posts about Daisy

> about

> absoloutely heart-breaking.

>

> Anyway, thought I should pass it on for those who knew them. The

> funeral

> is Tuesday. Please keep Sara and in your prayers

> , 's mom

>

>

>

>

[Guest guest]

We send our condolences to Daisy's family. Gilly too has Severe

Myoclonic Epilepsy of Infancy and I've known for a long time the

stats that some kids don't survive but I never thought Gilly was even

close to that until last spring when she went into status for three

months. She stopped drinking, then she stopped eating and then she

stopped opening her eyes; I thought we were going to lose her. Now I

thank God every morning for each day with Gillian and that our family

is together. I never take our little ones lives for granted anymore

as it can all change in a heart beat. We'll say a prayer for you and

your family Sara.

Liz

> For those of you who remember Sara and your little girl Daisy from

the

> UK, just wanted to let you know that Daisy passed away on Tuesday.

Daisy

> had Severe Myoclonic Epilepsy which has a very bad prognosis. But

her

> mom and Dad spent all of Easter weekend with her doing family things

> (the bizarre part is she was doing really well just before this

> happened) and Sara and Daisy had a wonderful day together on Monday.

>

> Sara has a very vivid beatiful way with words (you wouldn't have

seen it

> on this list but in the Cafe she can transport you to a meal she is

> cooking or her garden in an amazing way) and her posts about Daisy

about

> absoloutely heart-breaking.

>

> Anyway, thought I should pass it on for those who knew them. The

funeral

> is Tuesday. Please keep Sara and in your prayers

> , 's mom

[Guest guest]

Liz

I felt so bad, I posted about the SME, then next post I read was yours

about Gillian. I hope the diet is successful for you and will pass your

condolences on to Sara

Liz wrote:

> We send our condolences to Daisy's family. Gilly too has Severe

> Myoclonic Epilepsy of Infancy and I've known for a long time the

> stats that some kids don't survive but I never thought Gilly was even

> close to that until last spring when she went into status for three

> months. She stopped drinking, then she stopped eating and then she

> stopped opening her eyes; I thought we were going to lose her. Now I

> thank God every morning for each day with Gillian and that our family

> is together. I never take our little ones lives for granted anymore

> as it can all change in a heart beat. We'll say a prayer for you and

> your family Sara.

> Liz

>

> > For those of you who remember Sara and your little girl Daisy from

> the

> > UK, just wanted to let you know that Daisy passed away on Tuesday.

> Daisy

> > had Severe Myoclonic Epilepsy which has a very bad prognosis. But

> her

> > mom and Dad spent all of Easter weekend with her doing family things

>

> > (the bizarre part is she was doing really well just before this

> > happened) and Sara and Daisy had a wonderful day together on Monday.

>

> >

> > Sara has a very vivid beatiful way with words (you wouldn't have

> seen it

> > on this list but in the Cafe she can transport you to a meal she is

> > cooking or her garden in an amazing way) and her posts about Daisy

> about

> > absoloutely heart-breaking.

> >

> > Anyway, thought I should pass it on for those who knew them. The

> funeral

> > is Tuesday. Please keep Sara and in your prayers

> > , 's mom

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

> ---------------------------------------------------------------

>

[Guest guest]

Liz

I felt so bad, I posted about the SME, then next post I read was yours

about Gillian. I hope the diet is successful for you and will pass your

condolences on to Sara

Liz wrote:

> We send our condolences to Daisy's family. Gilly too has Severe

> Myoclonic Epilepsy of Infancy and I've known for a long time the

> stats that some kids don't survive but I never thought Gilly was even

> close to that until last spring when she went into status for three

> months. She stopped drinking, then she stopped eating and then she

> stopped opening her eyes; I thought we were going to lose her. Now I

> thank God every morning for each day with Gillian and that our family

> is together. I never take our little ones lives for granted anymore

> as it can all change in a heart beat. We'll say a prayer for you and

> your family Sara.

> Liz

>

> > For those of you who remember Sara and your little girl Daisy from

> the

> > UK, just wanted to let you know that Daisy passed away on Tuesday.

> Daisy

> > had Severe Myoclonic Epilepsy which has a very bad prognosis. But

> her

> > mom and Dad spent all of Easter weekend with her doing family things

>

> > (the bizarre part is she was doing really well just before this

> > happened) and Sara and Daisy had a wonderful day together on Monday.

>

> >

> > Sara has a very vivid beatiful way with words (you wouldn't have

> seen it

> > on this list but in the Cafe she can transport you to a meal she is

> > cooking or her garden in an amazing way) and her posts about Daisy

> about

> > absoloutely heart-breaking.

> >

> > Anyway, thought I should pass it on for those who knew them. The

> funeral

> > is Tuesday. Please keep Sara and in your prayers

> > , 's mom

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

> resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a

> professional keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

> ---------------------------------------------------------------

>