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Hello not been on this site for a long time (sorry) I'm Harvey Bretts grandad . My now ex wife joanne came on here a few times and raised questions and spoke to some familys ?? . My little Harvey left me March 4th 2013. and because of MY Harvey HARRY OSKAR and all the other beutiful Children I'm now a support worker going on a Epilepsy adminestration tomorrow . I will be thinking of them you/ all . love Dave XXX
I am a children's epilepsy nurse specialist. This is a wonderful website, all the children mentioned are inspirational, and my thoughts go outto all the families concerned.
Special is the word
that best describes you......
Special is a word that is used
to describe something one-of-a-kind
like a hug
or a sunset
or a person who spreads love
with a smile or kind gesture.
Special describes people
who act from the heart
and keep in mind
the hearts of others.
Special applies to something
that is admired and precious
and which can never be replaced.
that best describes you,
Harry you will be loved and forever missed, like Declan and many other Angels you were simply " To Beautiful for this Life " xxxxxxxx
just like to let you know how Harry's story touched me and reminded me how lucky some of us are, and how it can all change at the drop of a hat. Harry was blessed to have such loving parents.
Best wishes to you for the future
my cousin ahd the same thing, he is now gone to heaven with the angels, this is what i read at his funeral and made me understand a little more
I'll lend you for a little while a child of mine, God said,
For you to love him while he lives, and mourn for when he's dead.
It may be six or seven years, or forty-two or three;
But will you, till I call him back, take good care of him for me?
he'll bring his charms to gladden you, and should his stay be brief,
You'll have the lovely memories as a solace for your grief.
I cannot promise he will stay, since all from earth return;
But there are lessons taught below I want this child to learn.
I've searched the whole world over, for teachers kind and true;
And from the throngs that crowd life's lane I have chosen you...
Now will you give him all your love? Nor think the labor pain?
Nor hate me should the angels call, to take this child back again?
To which the parents did reply...
Dear Lord, Thy will be done.
For all the joys thy child will bring, the risk of grief we'll run.
We'll shelter her with tenderness,
We'll love her while we may...
for all the love this child will bring,
forever grateful we will stay.
But should the Angels call for him,
much sooner than we've planned,
We'll brave the bitter grief that comes,
and try to understand.
I have just read the story about molly. and all the other children my heart is with you all.
So glad I came across this page and got to read this special story about Harry.God bless all of you!!
what a beautiful boy harry was, now in heaven with no more sufffering.
thanks for sharing your story now i don't feel so alone
Today is Harry's 8th Birthday, his third one away from us. It hasnt been an easy day and we have all missed him so much. Thank you so much to all our wonderful friends and family who continue to support us.
To Harry Bear - we all love and miss you so very much Baby bear. I hope you liked the lanterns and balloons and that you have had fun with all the other angels. Stay close to mummy cos she really misses you.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Happy Birthday Harry Bear Miss And Love U xxxx
Happy 8th Birthday for tomorrow Harry Bear, Miss you lots. Love you always, Laura, Ste and Izzy xxxxxxxxxxxx
sleep tight harry, everyone misses you loads, your so brave <3 xxxxxxxxxxxxxxxxxxxxxxxxx
Stewart - My son Logan was also recently diagnosed with MPEI - we have tried alot of different things including a Barbituate Coma, and we will be starting the Ketogenic Diet in a couple of weeks. Please feel free to email/contact me as I would also like to hear more about John and your family. Also this support group has been awesome for me MPEIparentsupportgroup@yahoogroups.com I hope you and your family will find strength in knowing that you are not alone in this battle!
Sami - I have read your CaringBridge page, and I want to applaud you for being a great Mom! I know that there will come a time when we will lose Logan, and I can't imagine how I will survive it. I was also curious about your other children, since Cooper was a twin, and you have at least one other child, do any of them MPEI?? I've heard it's quiet common to have more than one MPEI child in the same family.
Rhea Hollars (Logan's Mom)
Sami Glisson says...
I dont really know how to reply to you or if you will get this but I just read your note on my son's caringbridge page. Please email me so we can be in contact. I am sorry you are going through this..There is not much support for this diagnosis in the US. Would love to get your take.
Stewart Salem says... I'm sorry about what happened to Harry. I feel terrible about your loss. My son John was diagnosed with malignant migrating epilepsy in infants two weeks ago. He is taking Triple Bromide, Steipentol, Klonipin, Keppra (which was proven to be successful in other cases in Italy, Japan etc. This all started about three weeks ago while we were in Florida and my son lips started turning blue and he stopped breathing. We then took him to the hospital. The first day he had 5 seizures and the second day he had the same amount all lasting between 15-90 seconds .Day three and four he was seizure free. Then day 5 he started having seizures again. We then took him on a medical jet straight to Children's Hospital Of Boston rated #1 in Neurology for Pediatrics. We were able to get a fast diagnosis and move forward with known successful combinations and also the Ketogenic Diet starting in ten days. My son is seven months old now and was a perfect baby that was born naturally and never had one problem till three weeks ago. I am facing an uphill battle but I am praying that my son will survive. This has been a total shock to my family and I.
I'm sorry about what happened to Harry. I feel terrible about your loss. My son John was diagnosed with malignant migrating epilepsy in infants two weeks ago. He is taking Triple Bromide, Steipentol, Klonipin, Keppra (which was proven to be successful in other cases in Italy, Japan etc. This all started about three weeks ago while we were in Florida and my son lips started turning blue and he stopped breathing. We then took him to the hospital. The first day he had 5 seizures and the second day he had the same amount all lasting between 15-90 seconds .Day three and four he was seizure free. Then day 5 he started having seizures again. We then took him on a medical jet straight to Children's Hospital Of Boston rated #1 in Neurology for Pediatrics. We were able to get a fast diagnosis and move forward with known successful combinations and also the Ketogenic Diet starting in ten days. My son is seven months old now and was a perfect baby that was born naturally and never had one problem till three weeks ago. I am facing an uphill battle but I am praying that my son will survive. This has been a total shock to my family and I.
Love you harry bear .......... Denise and family keep strong love you all 2 xx
I was reading this becuase my friend has a son who suffers from something like this. He has gone to many doctors but they don't know what is wrong with him, he has seizures and then his oxygen level goes low and he has to get hospitalized because he gets pneumonia, sometimes they even send her home with oxygen tanks for him. Now the doctors sre going to put a trache because he can't eat by himself and they fed him through a tube, he will never be able to talk and say mama or dada, its really sad. They also said that he might not be able to walk either. I'm writing to you to see if you could shed some light on them, the baby is only one year old and has been this way since he was born, do you know where we could look up different types of seizures?
Thinking of you loads Harry Bear and wish you were still here with me. I hope you feel my kisses i send to you. Stay close to me. Love you loads baby bear.xxx
Happy birthday Harry bear love and miss you so much.
love auntie sue&uncle eddie alex&tom
Happy Birthday Baby Bear. Mummy loves you all the world and misses you more everyday. Thank you for the feathers you send me. Sending you lots of love and hugs and wish you were here to get them.
Mummy Bear. xxx
Happy Birthday Harry, Your always in our thoughts love emma anton jordan and charlie x x x x
Missing you so so much Harry Bear. Your always in my thoughts. Love you loads an loads Laura xxxxxx
Thanks so much Denise for putting Ryan on your page. xx
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