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 Watcher,
We were thinking of you and Ashlee on Friday. All of our love to you. x

So sorry for your loss 💕

Thank you for thinking of others in your time of suffering. I'm so very very sorry, words aren't enough really...I cannot imagine your pain.
Thoughts are with you and your family. Your beautiful daughter will have lit up and will continue to light the world.

Oh I am so very sorry. Huge hugs to you. May she rest in peace xxx

Thank you for your kind words & for letting me know you’ve signed up!
That is what I want from this thread,I don’t want to hear or read of anyone else’s child dying from SADS,probably an impossible wish I know.
But it baffles me that our children aren’t tested.
We have scans in pregnancy ,heel prick tests,vaccinations etc & information blasted at us from all sides for the benefit of our children yet this condition is left under the radar unless someone we love has died & it’s too late!

Hi @YetAnotherHelenMumsnet thank you for keeping us in your thoughts on Friday,and also for the support I’ve had from HQ since Ashlee died,it really has meant so much to me

Watcher I couldn't begin to understand the depth of your loss but can.empathise with the situation at least. My dad fell asleep on his sofa on September 12th and didn't wake up, he didn't have SADS, he had coronary artery atherosclerosis but he didn't know. I had to wait a long time to be able to arrange his funeral. I've had people cross the road and ignore me because they don't know what to say and yes, trying to find the words to ask for help seems an insurmountable task. I think you're doing a wonderful thing in promoting awareness of this awful condition. My thoughts truly go out to you and your family and I hope you're all managing to at least physically take care of yourselves.

So sorry for your loss OP

Watcher I'm still about just seen knotty's post, your so brave to be trying to raise awareness at such a time, I'm in awe

I will share the link on FB.

I lost baby DS when my oldest DD was the same age as your DS, she had bereavement counselling. It did seem to help, I found it helpful too. I also found church comforting despite being (and still) lapsed.

Thoughts are with you, your son and your family. Everything crossed for you getting his results back.

Watcher my heart breaks for you 💔 I'm very sorry to hear for your loss, I have a son the same age and I don't know how I'd cope in you're circumstances xxxx

Sorry can't work out to share the link on my iPad but will go online tomorrow and do it 💙💔❤️

I'm very sorry to hear about your daughter

Having read your post, I've just booked my son in for a screening in March
(normally he'd tell me off for fussing but my mum died recently - nothing to do with her heart though - and he knows I'm more anxious than usual at the moment)

I am so sorry for this indescribable loss you have suffered. Thank you so so much for bringing this to our attention. xxxx

I'm so sorry for your loss. Thank you for sharing the info.

I can only add my utmost love and sympathy.
She sounded such a beautiful soul.

I'm so very sorry Watcher. A family member's partner died of this a few years back; it was devastating. It's very brave of you to raise awareness like this.

Hi WatcherOfTheNight I have only just seen your thread and would like to say how sorry I am to hear about your daughter. My husband died suddenly and unexpectedly of hypertrophic cardiomyopathy in 2013 in his 30s and my boys are now 7 and 9. We have regular check ups at an NHS hospital recommended by CRY and have also raised money so we can hold a screening day in his memory next year for young people. Although CRY won't test your ds at his age, I hope they have offered their support in terms of helping to access good doctors etc. Do contact me on here if I can be of any help with advice and reassurance etc..

How brave of you to post for others when you have suffered this terrible loss. Thank you for spreading this message.

I’m so sorry your lovely girl has gone. I can’t imagine the sorrow you must feel.

Hi everyone,hope you are all ok ?
I'd just like to say thank you so much to everyone who has commented & supported us this last year ,it's been many months since I've been able to read through but I have slowly read through your heartbreaking stories & will reply as soon as I can ♥️
It's been hard recently.

Woolly hugs particularly @knotty&pistey your generosity & kindness has kept me sane many a time when I've felt so alone,I genuinely am overawed by my hug & what you've done with CRY in my beautiful girls memory.

I wanted to post a little update for now & post a link for CRY ,so many youngster have been tested in the last 14 months ,it can't go without notice.

m.youtube.com/watch?feature=youtu.be&v=M9SBTn6r21w

Also,let's not forget the 12 youngsters a week who have lost their lives & are no longer with their family's.
The heartache & complete devastation is something I can't explain ,every child should be tested .
It's now thought that the figure is much higher but some children's deaths are recorded as something else .

Thank you also @MNHQ ,I was going through & deleting some of my 10.000 emails that have built up when I came across a notification that I hadn't seen .
I am so appreciative of your generosity & I've no idea how you found out but THANK YOU so much

I'm sure I'll be back over the next week or so ,I've lots to update but have struggled a lot .

Forgot to add that recently, around the first Anniversary of Ash's death ,in conjunction with a local charity,a screening day was held in memory of Ash,it was for 10-18 year olds .
This was the first for this age group as this age require a specialist paediatric cardiologist.

I can't remember if I've already said but screening is so important as many of these conditions are known to be hereditary.
Screening isn't provided at all on the NHS until a child has already died.
A simple ECG would prevent so many deaths.

I couldn't understand at first why I'd never heard of the condition that my daughter died from ,but as I've learnt more ,I've realised that we only hear of sports stars dying suddenly like this & that's because it's clear that yet again there is no funding.
More than 12 children/youngsters a week are dying but who cares?
Not our government or NHS.

Charities may provide screening but only from age 14 & sadly deaths occur at a much much younger age,some as young as age 4.
It breaks my heart knowing so many have died since my beautiful girl ,yet still nothing has changed .

Today is my Beautiful,vibrant girls birthday.
She was the sunshine & sparkle in our lives,she lit up every room she entered.
She had an inner strength like I've never or will ever see again.
Without her we are broken.

I don't have many words today but I want to try & make people aware of how many youngsters are dying like this & to show that they are people ,children ,who have families. They are not just statistics .

When a child or young adult dies from SADS,there are often no answers .
Families are often left not knowing why this has happened or if it will happen again & it's excruciating.

Please,look into SADS & other hidden cardiac issues in youngsters .
If you've a child ,especially one into sport and fitness get them screened.
CRY do free screening days throughout the year & lives have been saved through screening.

www.c-r-y.org.uk

Screening dates

www.c-r-y.org.uk/screening/

Thank you for posting the link and raising awareness. 12 children a week is just devastating.

Your daughter looks like a lovely smart young woman. Hugs to you today.

Thank you so much @EstrellaDamn ,she really was .
She had been through so much & was a very determined,hardworking girl.
She was home preparing to go abroad with Erasmus. She had so much left to do.

There is very little awareness with sudden deaths & undiagnosed heart conditions in children & young adults.
I've spoken with many mums over this last year ,they ,like us ,knew nothing about SADS until it happened to their child .
Some of the children are as young as 4 years old.
Some families have 2 children who've died within a few years of each other .

We all say the same ,if we'd known ,our children would've been screened.
An ECG is so quick & simple to do .

@MNHQ you asked if there is anything you could do to help ,could the screening dates be posted somewhere so that they aren't missed?

[quote WatcherOfTheNight]@MNHQ you asked if there is anything you could do to help ,could the screening dates be posted somewhere so that they aren't missed? [/quote]

Hi Watcher, thanks so much for posting the photo of your beautiful girl. So sorry we missed this on Tuesday - we really hope you got through the day okay and are sending good wishes from all at MNHQ

Thanks too for posting the C-R-Y screening date links - it's so important that more parents are made aware of SADS and more children are tested. We're having a think about how we can help and will let you know as soon as possible.