Please help, I lost my son

A

ashleysmum

Member
Messages
5
Type of diabetes
Type 1
Hello, my name is karen,
On the 14 june this year I received a phone call saying my son had died, i was horrified, the outcome of the inquest, although it isn't until the end of the month, the coroner has confirmed natural causes due to his diabetes. Dead in bed syndrome, i didnt even know what it was,I am trying hard to get signatures, the petition is at change.org "stop 'dead in bed syndrome' for Ashley, because he mattered". I also have a fund going on fundrzr.com, Ashley's headstone fund. I have had a response from baroness young at diabetes uk and I am still working on getting a device to help this, maybe something that can administer glucagon. I have had a lot of people say, "it's rare", but all you parents, can you imagine if it was one of yours? It doesn't matter how rare it is then, I've already lost my angel, I don't have to do anything, it's not going to benefit me or my family anymore is it?, but I wouldn't want any parent ever to get a phone call saying, "I'm so sorry, I don't know what's gone wrong, Ashley's died!". Words that will haunt me forever. He only turned 19 in march and died in June. I had my local paper, the lynn news publish a beautiful article about Ash, this syndrome and my causes. When Ash was diagnosed, 2 months before he was 13, we didn't have the Internet, we were told very little and basically get on with it, please, everybody, anybody, sign, re post, do what you can, not for me but for a beautiful 19 yr old kid that loved life and was a bundle of fun and smiles and for any parent off a diabetic young person. Thank you xxx

http://www.lynnnews.co.uk/news/local/la ... -1-5461574
 
C

carraway

Well-Known Member
Messages
977
Type of diabetes
Prefer not to say
Treatment type
Other
Hello


I am so sorry for your loss. As a parent I cannot begin to think how you can cope in a situation like this.

My son Gabriel was still born in 2005 but I think what you went though was far worse as you knew and loved your son, who should have had his whole life in front of him

I am so very sorry you needed to be here. I will look at your link and pass it on


Cara xx
 
Robinredbreast

Robinredbreast

Oracle
Messages
18,448
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Bullies, Liars, Trolls and dishonest cruel people
Hello Karen, I have looked at the link and I just wanted to offer you my sincere condolences for your sad loss. I can not begin to imagine what you went through and what you are still going through. You are obviously a very proud mum.

Please take care of yourself Karen.

With heartfelt wishes,

RRBx
 
A

ashleysmum

Member
Messages
5
Type of diabetes
Type 1
Thank you for your kind words, I appreciate them all, let me just say that the article may leave you thinking, stereotypical teen, but he was far from that, When he wrote us a card from hospital when he was ill the christmas before last he wrote on the envelope, 'TO MY HEARTBEATS', Im blessed beyond belief to have had him as my son, heres a little description of Ash, never rude to adults, never into crime, would help old people,(lived in a village), always had a smile, looked after his severely disabled brother and dealt with his personal care. Didn't hang around on streets. His problems at school were to do with his diabetes, he was made to do his injections in corridors,(no medical room), he hated being different, when his blood augers raised or lowered, (most of the time, because no support at school), his behaviour would become rude or moody as most will know and he would then be made to sit in the 'ELR' room, (exclusion from lessons), he loved school and hated being excluded, (punished for not being able to control his levels!). His ADHD didn't make him a terror, it made him, hyper, mischief, never still, forgetful. Ashley was a truly rare teenager, he had maximum respect for me and all woman. I miss him terribly.
 
destiny0321

destiny0321

Well-Known Member
Messages
219
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
people who think nothing is wrong with you because they do not see blood or a plaster cast, i suffer with arthritis & use a zimmer & wheelchair but because they cant see anything wrong people assume nothing is wrong with you.
I cannot imagine the grieve you have gone through & your son sounded amazing.
but at least you are focused on your course of action.
My prayers are with you & thinking of you all my love destiny.xxx
 
A

ashleysmum

Member
Messages
5
Type of diabetes
Type 1
Am I in the right place for my post? I want people to sign my petition and I'm also trying to raise money for my boys headstone, can anybody help to let me know if I should post somewhere else on here. Thank you
 
alohanicky2009

alohanicky2009

Well-Known Member
Messages
182
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Fish , bad manners,
Sorry I will give my son a big hug tonight , please keep us posted when you find a place so that we can sign your petition , x


Sent from the Diabetes Forum App
 
I

iHs

Well-Known Member
Messages
4,595
Hello Karen

I don't know what to say except that I'm really sorry to read your message. Sadly Dead in Bed syndrome happens very rarely but none the less, it happens. I always advise people to test their bg levels during the night just to make sure that their bg levels will be what they expect but if low, they can take action and eat something. Continuous glucose monitoring which is now available (although costly) would tackle the syndrome so let's hope that if enough people sign the petition http://www.change.org/en-GB/petitions/s ... e-mattered the wheels will turn a bit more.
 
A

ashleysmum

Member
Messages
5
Type of diabetes
Type 1
I know there are monitors but I think what's needed is an emergency measure, my sons life was priceless, the thing is he struggled big time with his diabetes, he wouldn't wake up to any alarm as he was a deep sleeper, dead in bed syndrome affects anyone even with good control, my son could go into a hypo with a loud bang etc, if my other son was diabetic type one he would be fully dependant on me as he is severely mentally disabled, when would I sleep, there are bound to be many other disabled children or young adults that are diabetic. Every one as precious as the other, something needs to be done for safety during the night, there is no warning for dead in bed, your levels could be good before bed but it still happen. My son died literally less than 2 hours after he fell asleep and he wasn't at home with me either. Can I ask everyone to please sign my petition, I'm only doing this to benefit others as I've already lost my beautiful boy. Thank you
 
J

julie54

Well-Known Member
Messages
86
As a Mum myself, I can only imagine the pain of your loss. I have signed your petition. My thoughts are with you. Julie
 
S

sw11bloke

Well-Known Member
Messages
207
Im so sorry to hear this. this also happened to a friend I had in school who was diabetic. 10 years later, I became a type 1 and to this day, my friends passing has haunted me. Many nights I go to bed thinking it could happen to me.
I agree with your petition and support it wholeheartedly. I do feel that more research needs to be done into a small unobtrusive device that monitors blood glucose...perhaps a tiny implant that could send a wireless transmission to a mobile or some other device activating an alarm. Perhaps its a situation where these drug companies earn too much money from test strips!!!!
I really cant believe that in this day and age, they do not have a device of some sort.

I hope you find peace Karen. God bless you and your family.
 
M

malmal1

Member
Messages
13
Type of diabetes
Friend
Treatment type
Diet only
ashleysmum said:
Hello, my name is karen,
On the 14 june this year I received a phone call saying my son had died, i was horrified, the outcome of the inquest, although it isn't until the end of the month, the coroner has confirmed natural causes due to his diabetes. Dead in bed syndrome, i didnt even know what it was,I am trying hard to get signatures, the petition is at change.org "stop 'dead in bed syndrome' for Ashley, because he mattered". I also have a fund going on fundrzr.com, Ashley's headstone fund. I have had a response from baroness young at diabetes uk and I am still working on getting a device to help this, maybe something that can administer glucagon. I have had a lot of people say, "it's rare", but all you parents, can you imagine if it was one of yours? It doesn't matter how rare it is then, I've already lost my angel, I don't have to do anything, it's not going to benefit me or my family anymore is it?, but I wouldn't want any parent ever to get a phone call saying, "I'm so sorry, I don't know what's gone wrong, Ashley's died!". Words that will haunt me forever. He only turned 19 in march and died in June. I had my local paper, the lynn news publish a beautiful article about Ash, this syndrome and my causes. When Ash was diagnosed, 2 months before he was 13, we didn't have the Internet, we were told very little and basically get on with it, please, everybody, anybody, sign, re post, do what you can, not for me but for a beautiful 19 yr old kid that loved life and was a bundle of fun and smiles and for any parent off a diabetic young person. Thank you xxx

http://www.lynnnews.co.uk/news/local/la ... -1-5461574
Click to expand...
 
Top Bottom