My Beautiful girl

[WatcherOfTheNight]

Hi everyone,I haven't been around for a bit but I just want to share this & hopefully prevent other family's suffering as we are.

On the morning of 1st September this year,I found my beautiful 22 year old daughter who was home from uni,on the floor in her bedroom.
She was already beyond help.
It's been horrendous,no answers or support from anywhere for many weeks.
We were only able to finally lay her to rest on Friday
2 weeks ago we found out she died from Sudden Arrythmogenic Death Syndrome.

Every week 12 Children or young Adults die from SADS.
That's 120 more sudden,preventable deaths of young people since my beautiful daughter Ashlee left us.

CRY (cardiac risk in the young ) hold screening clinics for all 14-35 year olds.
The NHS WONT test our children unless one has already died from the condition.

Too little,too late for us,but maybe not other family's.

#4ASHLEE💔

www.testmyheart.org.uk

Hi @DawnMumsnet ,thank you so much ,really appreciate this & all the other support I've had from You,HQ & Woolley hugs since Ash died.

Any awareness helps so much !
On the CRY website there are many pictures of some of the children who have died ,it really puts it into perspective when you see that.

Knowing that these deaths are preventable is hard to deal with ,especially when I think of how many other families have gone through the same as us since & still nothing is changing.
2 in particular haunt me ,one child was only 6 and the other just 4,so so young

Since this thread I've had my children tested through the charity and have shared with friends
Thank you for highlighting this, I'm so sorry about your beautiful daughter
Much love xx

I am sorry for your loss OP, thanks for raising awareness, especially at this time 💐

Not checked in on this thread for a while but I'm not as strong as I have been & I'm trying to sort out another screening date in DDs memory which reminded me to look back here .

I see more of you have had your children screened
@justaweeone thank you for posting that you've been with your Dc ,and thank you to the others who've pmd me . I am so pleased that the word about SADS etc.
is getting out slowly .
I'm hoping to hear more from @MNHQ about the screening dates being linked somewhere here ,@DawnMumsnet is there any update ?

I feel I have to add to this post that I started posting about this when I was very kindly mentioned & nominated to receive a WoolyHug.
This blanket is now one of my prized possessions,I'm so very grateful to everyone who played a part in it.
When I was told it was a hidden heart condition that killed my DD at the same time that WH contacted me ,I was in shock but wanted raise awareness of SADS & other undiagnosed heart conditions because I wanted to try and prevent other families going through the horror that we are.
I would like to see as many children & young adults tested as possible,hopefully this will become as "normal " for children as inoculations are one day & will save many ,many lives

I have shared some of my story & some of our experience of what we are going through ,I have not shared it all ,not with MN or anyone else .
I have only told the bare minimum of the things I feel able to talk about .
I hope that this is enough for people to understand just how difficult it is .

I stayed away for a long time as I am still struggling but I've been back on & off the last few months which has helped me start to interact with others again.
There are still problems but I'm trying to deal with them & I'm doing my best ,that's all I can do

Hello Watcher
I'm so sorry - I have no words of comfort for you, only the fact that she was obviously much loved and as a family you will have given her much happiness

The fact that you care enough to post is a comfort @TwitterQueen1 . Thank you

A friend who lost her son has been screened, along with her other children. They all have a genetic condition. The family history screams cardiac problems. Several unexplained sudden deaths in young people.
She always thought her son had something wrong with his heart. Begged the GP to refer him.
Nobody would listen.
After he died, finally, they were referred.
This is the NHS. No action till somebody dies.
No treatment until you are seriously ill.
Thank you for raising awareness.

So sorry for your loss.

Thanks @Babyroobs

@endofthelinefinally ,I hope these past days have been kind to you
sadly they often don't listen or they don't have the funding, much like other areas of the NHS.
I had to take an information pack to our Gp from CRY ,so many GPs are still not aware of these hidden cardiac issues in youngsters.

I've not been about much ,I've Hit a really low point .
We find ourselves in the position where we may never find out what killed my beautiful Dd. All the "usual" cardiac conditions have been ruled out & we must now wait for panel to decide wether they think it's worth going further.
I'm disgusted,and heartbroken,my DD has been failed yet again & I don't know if I can cope with never knowing .

My Ds is still having strange episodes ,they can't tell me if these are related & I'm petrified I'll lose him too .
I am just so thankful for charities like CRY & Welsh Hearts for trying to raise awareness & the screening they do . People rarely listen if it doesn't affect them ,so many more of our young would die needlessly without them .

I'm hoping this link from CRY posts .

I a so sorry watcherofthenight. You wait so long for the inquest and then find that you still don't really know.
I don't know how we deal with it, how we manage to go on.
My friend was beyond rage and grief that she had been fobbed off by doctors for years.
I was devastated to learn that if the person with my son that night had just turned him on his side he would still be here.
My other friend learned that the person who killed her child should not even have been in the country, let alone behind the wheel of a car.
As mothers, we never let go of that need to protect and nurture our children.
Then it is taken out of our hands and we never come to terms with it.

I'm so sorry I've not checked this thread @endofthelinefinally ,I try to avoid everything when I feel the blessed numbness .
I've read your post breaks and it breaks my heart . I feel what you've written to my core and can relate to you saying about bring fobbed off 100%.

We weren't even granted an inquest,why I still don't really know & I don't have the strength or energy to delve into it still .
CRY have offered their services when I send them the post mortem etc but I'm struggling as it is so I've just fallen flat of my responsibilities &feel I'm failing her all over again.
It's all I can do to support & get DS the help he needs ,anything else I'm just not up to doing.

I found out today that locally,an 18 year old girl was found by her DM ,she was dead in the bath ,they've said it's SADS ,just like with DD .
it's broken me all over again with remembering finding DD.
I feel so awful though ,because they found her quickly so she was revived & lived for 4 more days & I would give everything & anything for more days with my girl .
I feel terrible that I'm thinking like this .

Ive come to the conclusion recently, that this is it ,I'm broken now beyond repair .
I don't care much about anything & have become selfish I think ...I always had such care & empathy so being like this is hard to accept.

Anyway ,I'm sat with my pooches in the garden having a few vodkas hoping soon for numbness to come again .
I hope you are keeping well

Oh bless you, watcherof thenight.
I have said those words "I don't care" so many times since ds died.
I spent my whole life caring for people. I am unable to deal with the rage, the sadness. I tried so hard to get the NHS to help him but there was nothing.
You haven't let your dd down. You have done what you can to educate and inform. You should feel proud that you have done that. It is so hard to just drag ourselves through each day.

You are so right @endofthelinefinally ,I am so sorry but I'm feel comforted that it's not just me that feels the rage etc ,perhaps it means I've not yet lost it completely.

I would like to do so much more with awareness but I get so defeated when no one listens & I have so little strength at the moment.

I lose more of myself every day ,it seems like my mind & heart are with DD & all that's left with the rest of my family is the a shell that I don't recognise.

My heart breaks knowing that you feel this horrific pain too ,it makes no sense does it ?
I had a hard time growing and through later years . I thought I was strong so could get through anything,how wrong was I .

Anyway ,thank you so much for replying again ,it helps to know I'm hopefully not mad not completely alone

Hi watcher
Thank you for sharing your daughter's story, and for trying to help other children and families avoid the same. I didn't know you could have your children screened unless there was some sort of family history. I will definitely look into doing this.

Thank you

Thank you @springgreensunshine .
Most people think the same ,as did we until DD died .
I find it abominable that families have to go through bereavement of a child before screening is done .

624 a year !(thought to be much higher)
That is more deaths than from some illnesses our children are inoculated for ,it makes no sense.

America is starting to push for early screening too,mostly because they are losing promising young athletes before they've even begun it seems to me but anyway,it's progressing .

Anyway ,I am updating on the off chance that anyone might still be reading because I had a letter from our cardiac nurse today .
The MDT decision is that we will be offered an appointment with Genetics .
After a difficult few days (Ds birthday) I am so happy to hear this !

I hope this will give us answers but if not it may advance research which is desperately needed.

624 a year

That is a shocking figure. I didn't realise.

Did you do something to mark your daughter's birthday?

So sorry OP. We lost our daughter, Rachel, also 22, only child, last April from SADS too and are still devastated. We had no inquest either. As these are death from natural causes they don't need inquests. We couldn't have the funeral for 14 weeks.

It is isn't it @springgreensunshine ,so many children & young adults are dying yet so few people have heard about SADS & Sudden Cardiac deaths ,it's so hard to get the word out.
Also,current research indicates that it is a lot higher than 624 because deaths have been recorded as something else.

To answer your question,we didn't do anything to celebrate her birthday,I just couldn't,I spent most of the week hiding away & crying. My grief is still too raw & I'm not just missing my daughter but my best friend & soul mate.
We were so very close ,we spoke multiple times a day even when she was away at University
A few of our family and close friends called in throughout the day which was nice ,some of them do want to do something to remember her so I'm hoping I'll be strong enough next time .

I don't know if this thread will get enough attention, but I wanted to let people know that Tesco have chosen CRY to be eligible for one of their Centenary Grant initiatives.
If anyone shops at Tesco,please consider putting your blue tokens in to support CRY .
At the moment they are the only charity doing free screening & this would be a huge boost for them.

www.c-r-y.org.uk/bags-of-help/

Just another plea for Tesco shoppers to consider CRY
♥️💜♥️

www.c-r-y.org.uk/bags-of-help/