My beautiful 24 year old daughter passed away almost 3 weeks ago from epilepsy.
Rhianna was planning her whole future with her partner of 3 years. Studying nursing & criminal psychology at University.
She’s been on a cocktail since puberty of meds & has a vegal nerve stimulator fitted as a teenager.
Her epilepsy spiralled. I will be fighting the system. She was vulnerable with Aspergers syndrome too. She was let down terribly by the system. As a mother my voice was taken away as she reached a certain age. I couldn’t get her help or speak for her anymore & that’s so wrong. I’m still her mother. I’m going to fight to change the law. My daughter was living in supported living because she wanted to live as a grown, independent, woman. I couldn’t speak to her support worker her knew all my concerns and worries. She wasn’t aloud a spare key for family or friends. I saw her the week before Rhianna died & she was trying to send her epilepsy specialist email to let her no how worried & scared she was & that she needed help. The email wouldn’t send because the nurse was on holiday, so i asked Rhianna to call the centre to ask to speak to her there or someone at the Q.E hospital, if i could have spoken for my daughter she would have been alive now, when her partner called emergency services to get into her tiny, unsafe flat. She had died all alone. I couldn’t even speak to doctors! 
We Bury Rhianna on the 27th of this month.
It feels as though my world has ended.
Her little brother is 15 & struggling. Her dad is broken. My world is torn apart. My light has gone out. My baby girl taken so suddenly & cruely.
I can’t breathe
This awful curse I’ve carried, my nightmare that came true, the gean I passed down from nowhere to my daughter, the epilepsy curse I have too!! I am also on a controlled cocktail of the highest dose because I was able to shout from the roof tops. But my voice was taken as a mother, that’s WRONG we as parents to vulnerable children, teenagers, women, men must have a voice! They are our children for life!! We know more, we have lived it, not by text book, we know the real pain!!
My heart has broken into a billion pieces 
I have to survive for my boy.
I have to take sedatives to try to sleep.
I miss Rhianna.
The most beautiful girl in the world.
Why???!!!
I will never give up on our daughter, not until the day I die.
Hello,
I’m part of the Online Community team and I can see that you are new to the community - I’d like to thank you for bravely starting this thread and sharing how you are feeling about your daughter. I’m so sorry to hear about how traumatic everything has been and how you are feeling; it must feel so devastating. Most community members have sadly experienced the death of a loved one and so will understand some of what you are going through.
You may also find the following Sue Ryder resources helpful:
- Bereavement information pages
- Our recently launched Grief Self-Help Service which provides articles and interactive tools to help you cope with grief
I really hope you find the community helpful and a good source of support and I also hope you feel you can access more support should you need it.
Thank you again for sharing – please do keep reaching out and know that you are not alone.
Take care,
Susannah
I am so so sorry to hear about what has happened to you. My heart goes out to you. My daughter had a bipolar diagnosis. It took years and years of her fighting the system to even get a diagnosis. She was on an ever changing cocktail of drugs. My grandaughter and I were with her at home when she died. I came round to find her ‘asleep’, something she often did in the day. We were checking her every ten minutes or so. On the final check it was clear she had literally just died. Like you, my family seemed to fall apart. We are all still traumatised yet there’s been no help for any of us, including my two teenage grand children. I can also relate to how you are feeling about the genetic element of epilepsy. I have researched bi polar and it seems there is a genetic element to that. As soon as I found that out, years ago, I felt that I had contributed to her illness. Please don’t blame yourself for something you are not responsible for. You didn’t choose your genes, it is not your fault in any way. You loved your daughter and you have done everything you can. We are none of us miracle workers and we loved our daughters and supported them. We love them still and that won’t change. It’s very early days and you must be traumatised and feeling pain beyond words. Like you I battled and battled to get timely and useful help, but she never got all the help she needed and the support she got was never enough. Since her death I have battled with social services and school to get my grandchildren the help they need to come to terms with losing their mum. It never arrived. Your story and my story are all too common. I was told that as a grandparent I have no right to speak out for those girls. As a mum, like you I was not heard.
You are going through the worst experience it’s possible for a mum to have. To lose your daughter so young is beyond tragic. I can honestly say coming on this website has helped me begin the very long journey of grief. You will find you will get support and understanding from others on that same painful journey. It can’t fix what’s happened but it does help to know you aren’t alone. I’ve found that I have had to find help for myself, social services don’t have the staff or resources to help. If anything they damaged us all before refusing to help. The other thing that has helped me is contacting Compassionate Friends who help people who have lost as son or daughter. They have a website like this and hold meetings in some parts of the country. They also have a Grief Companion scheme. They match you with someone who has been through a similiar experience. I contacted them and they were absolutely supportive and understand, because it’s happened to them. They found me a grief companion who lost her son in 2017. She phones once a week or more if I feel really awful and is rock solid in her support and I can say things to her that I can’t say to my family because they are upset enough already. If you go on their website you can email them and they will get back to you with support and genuine care and understanding. I send you all my very best wishes and you deserve to be enfolded with love right now. Please keep on posting, you can say how you feel and people will listen and share with you. It’s a teeny, tiny step but over the months it does help to feel less alone and talking to people who truly ‘get it’, it’s happened to them. Bless you xxx
Just sending you love. 
Thinking of you and sending love
Sending you love and hugs too Rhianna. I lost my son 12 weeks ago and my heart goes out to you. This has been the worst year of my life…the pain of losing a child of any age ( Andrew was 38) is indescribable.
Love Sue xxx
Thankyou so much.x
Thank you for your support. X
Hello Nell. I am so sorry you lost your daughter too.
I’m not coping at all.
I just want you to know your message means so much to me right now.
I send you & your family so much love.
X
Thankyou
I’m so sorry you have list a child too.
Sending you love in & light in the darkness 
Thankyou 
Bless you xxxx
Hi Sue, I lost my son 2 1/2 years ago. He was 37. The most awful thing that has ever happened to me. My Dad died 6 months before him and I know they are together but every day still I get upset. I hope you have people around to support you . Much love XX
Hi HJP,
Thank you for your message. I’ve just read through some of your posts and it seems you had a similar relationship with your son as I did with Andrew. We were very close too and he had his own flat and his dog…his best friend. Andrew’s birthday in July is his 39th. We used to go to Cornwall too for summer holidays when the boys were young…Andrew always wanted to go back. Being so close was so lovely but makes it so much harder to get through the days without them…doesn’t it?
I hope you have some bright moments in your days.
Love and hugs…Sue xxx
Oh goodness ! So many similarities! Please keep in touch. I find it so difficult to express how I feel . My son and I were very close and I miss him more than anything . I changed the flowers on his grave today and have sat thinking about him tonight. Thank you so much for replying xx
Dear Rhianna. I am so so sorry for the loss of your daughter. My daughter died 7 weeks ago in a mental health hospital. She was just 19. She had Autism, ADHD and also had seizures. She died alone on a plastic mattress in the hospital
. We don’t know exactly what happened as we have to wait for the inquest. The pain, agony and heartache is totally unimaginable. I have found compassionate friends understanding and hope to join a local support group. I am not sure if time helps, I guess its individual but I am finding its getting harder as time goes on. So perhaps if that continues counselling may also be a help. I also want to change the system as the public don’t seem to realise what is actually going on in the care system for people with autism and other conditions especially where you have combined physical issues and disabilities.
Andy X
Dear Andy, I am so sorry to read what happened to your daughter. My daughter aged 39 died tragically in January. She was diagnosed with Bi polar disorder. She spent a good deal of her adult life fighting to get a diagnosis and then proper treatment, she never got all the help she needed. Mental Health services are in an appalling state and have been so for decades, long before covid. Sadly way too many people are unable to get the help they need, and often get no help at all or inappropriate ‘help’. My heart goes out to you and your daughter. I can’t take away the outrage, pain and misery that you are suffering, to lose your daughter in a place where she should have been safe. There aren’t any words. I send you my respect and hugs. I wish you peace in the future as you travel this painful path. I hope you keep posting. Xxxxx
Thank you Nell.
I am sorry to hear about your loss as well. After fighting for solutions and appropriate support for my daughter for over five years we never really got anywhere. I don’t think anyone really knows what to do or where to place our children when they have complex issues. There are far too many avoidable deaths happening, and it’s so extremely sad because all of our children whatever age they are, deserve better. It just seems to be the money is not available to provide the right support. Andy X
Rhianna my Daughter she was finally buried on the 27th of June. After such a long wait, when she died all alone on the 20th of May.
My world, my light, my beautiful 24 year old daughter with her whole life ahead of her!
I’m not coping!!!
I’m struggling to cope.!!
I want to die & be with my daughter!!
No-one understands my pain!!! I’m so alone!!