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

Deepest sympathy, and well done for getting the word out, there are too many young victims to SAD. for you.

So sorry OP....there are no words. for you and everyone else who have lost loved ones

I’m so sorry you lost Ashlee, it must have been so lovely for her to have a mum that thought of her as her best friend. Thank you for telling us about SADS and the testing available. Much love to you and your family

Thank you everyone for your condolences & for taking the time to share your own heartbreak x
We had a bit of wobble yesterday afternoon,it hits so hard at times.
We are taking Ds for his first appointment first thing,he’s been so frightened since this happened to his sister.

Since Ashlee died,most people have said to us that they also had no idea of the condition,unless like some who have posted here,it is to late as someone they love has already died.
Such a waste of young lives,so many families devastated.

Cake I am so so sorry to hear about your daughter
Sparkles I’m sorry to hear about your friends Ds,I hope the rest of the family are ok.
Finding out that the condition is genetic is terrifying x

I will be back later to read the rest of the posts,traffic to the hospital is terrible in the morning so it’s an early start for us.

I am so pleased to see posts from people signing their loved ones up for screening,everyone should know about this Xx

You're trying to do a good thing in her memory and with your knowledge x

I'm so very sorry

A friend of mine died of SADS 17 years ago at 21. We all hung out, he went home to bed and never woke up.

Thankyou for raising awareness of this.

Oh Watcher, deepest condolences to you and your family, so sorry for your loss

So sorry to hear about your daughter. Thank you for raising awareness of this and potentially saving the lives of other young people

My beautiful girl helped everyone she could,she hadn’t had an easy time of things but still helped others.
She would want me to do this I’m sure of that.
My son started his tests yesterday,he has to go back for more soon.
He’s 10,he wouldn’t be eligible for screening with CRY but there are children younger than him that have died from this condition.
We’ve been told at the moment he’s not to do any unsupervised sports.
He’s our only surviving child as we also lost a baby before he was born.
Consultant said yesterday that could also be relevant.

Please,If CRY hold screening in your area,sign up or tell others who may be eligible x

what a story x hope your ds is ok

i will spread the word xx

So very sorry for your loss

So sad. My thoughts are with you. Thanks for starting this thread.

I’ve just read through the thread a bit more,I’ve tried a few times but today has been hard again.
I can’t believe how many on here have lost a loved one to SADS,it’s heartbreaking
Also,many posting who’ve lost children in other ways,I feel so much for all of you,whatever the reason we are not supposed to lose them,it’s just horrific & senseless.

I’m so sorry youarenotkidding,Millie & shifty,losing a friend when so young is awful,you all should have many more years together having fun & experiencing life.
I know my daughters friends are still in complete shock,when there is no accident & no illness as such to explain a death,it seems more difficult to accept.

@expatinscotland
,I’m so sorry to hear about your daughter,
& that your family are going through cardiac testing too.
How is your BIL doing?
I hope the tests are arranged quickly,we’ve found it so hard waiting,especially for Ds.

I’m so sorry @Chapterandverse,you must miss her so much I completely get where you are coming from,I feel the same.
I seems that we will never heal from this xx

@ChanandlerBongsNeighbour So many families suffering from this,I can’t believe I hadn’t heard about it before or that it’s not being publicised more.
I’m sorry for the loss of your cousin,I hope that the family have been tested & are clear! X

Thank you for sharing this and deepest condolences for your tragic loss

Thank you for taking the time to read & for caring,if one family gets spared what we have,it will be worth it!
Also thank you those who have pmd,I really appreciate it,the amount of people who avoid us as (I’m assuming) they don’t know what to say has shocked me.
I will message back,still got Ds home at the moment,he’s gone back in 3 times but hasn’t coped,we are putting plans in place to try again over the next week.
Fingers crossed!

I hope your DS is OK, sounds like he needs his Mummy a lot at the moment, which is very understandable. I've a 10 year old DS and much as he moans about his big sister, he's secretly very attached.

When will you get his test results? If he does have it can they treat it in anyway?

I hope you can get through Christmas, it must be so hard being devastated by the loss,of your daughter but wanting to give your son as nice a time as you can.

Sorry to hear people haven't been asking how you are. If there's anything you would find helpful to talk about I'm sure plenty of us here would help. Equally if there's anything you don't feel like talking about please ignore the questions.

I am very sorry for your loss.

How brave you are to write about this, and so movingly. I have now read the info on the link you provided and Wikipedia so here is another family more aware. No words for what you’re going through.

Im so sorry for the tragic loss of your lovely daughter.

I've gone cold all over. I can't even begin to contemplate the absolute torment you're in..
Sleep peacefully, beautiful Ashlee xx

I am so very sorry for your loss

I hope your poor brave boy manages to make it through a test soon and is shown not to be in danger.

What a terribly sad story OP, I am so sorry this has happened to you and your family. Well done for raising awareness at this dreadful time for you all. Hope your DS gets through his tests ok. You will probably already be aware of this but I just wanted to draw your attention to Winston's Wish if your DS needs some additional support: www.winstonswish.org/

Best wishes to you all and RIP to your lovely DD x

Thank you @VodkaLimeSoda27
I’ve heard of winstons wish & recently followed the page on FB,I’ve not really read what they offer though.
I’m not really a Facebooker but have used it again recently to read all of the posts her friends have put up,they’ve also shared photos which I will treasure.

The issue I have at the moment is I really don’t know what to say! I know now we really do need help from somewhere but I don’t think I can physically say the words I need to say as I don’t understand what anyone can do for us if that makes sense?
I know it’s probably a bad day,hoping tomorrow will be easier. X

So sorry for your loss of your daughter xx

I've joined their list and shared on fb x

I am so , so sorry X