Name: Petra Williams

Organisation: Darcey’s Dream – My Family and Siblings Matter

Award Category: Inspirational Mother

Sponsored By:

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My Plea:

Hi everyone my name is Petra Williams and I am the founder of Darcey’s Dream – My family and siblings matter reg 1173488. I set up Darcey’s Dream in the name of one of my twin daughters Darcey who sadly grew her wings at 9 and a half weeks old when she died suddenly. Darcey was born on the 25th November 2016 with her twin sister Layla-Grace. They were born at 36 weeks and were both really good weights for twins born early. Both twins were really healthy and were allowed to go home within a week. The twins were inseparable from birth and did everything together alongside their older sister Emelia-Paige who was like a little mummy to them. Emelia-Paige was so proud to have twin sisters and she loved to help me look after them feeding and changing them. We enjoyed our first Christmas together and welcomed in the new year with all three of our beautiful girls. We were so looking forward to watching them become best friends and grow up together. We did lots of activities and spent lots of time together as a family.

Little did I know that on the 1st of Feb 2017 my world would come crashing down and my life would never be the same again. I had three amazing little girls and felt extremely blessed until that day when Darcey grew her wings at just 9 and a half weeks old. Darcey stopped breathing at home and was rushed to A and E but they were unable to save my beautiful baby girl. Prior to Darcey’s death she had become unwell and I was backwards and forwards to the doctors with her. The doctors kept saying she had a viral infection and that it was nothing to worry about. Four days after Darcey passed away her twin sister Layla-Grace presented with the same symptoms and after extensive test it was reviled she was suffering from bacterial infections and was treated for meningitis and Sepsis. Layla-Grace was in hospital for 1 month being treated.

That morning when Darcey stopped breathing I tried with every piece of me to get her breathing again. I had never performed CPR and never in my life would I imagined having to perform it on my own child. Mothers instinct just kicks in and I would of done anything to save my little girl. When we got to resus and you see the emergency team franticly trying to save your little girl. For anyone to watch a team trying to resuscitate a baby it is brutal on their tiny little bodies and as a mother you feel totally helpless. When that doctor said those words I AM SORRY THERE IS NOTHING MORE WE CAN DO my world in that instant came crashing down. You feel like its not real and you are on the outside looking in, you cant take in anything anyone says the only thing you want to do is swap places with your child lying on that bed. In that moment I would of given my last breath for her to take one more I would literally of done anything for her to live. When a child dies the whole process is just wrong. I picked up my beautiful little girl who’s body was broken from them trying to save her life. I kissed her over and over again willing with every piece of me for her to just breath again. I starred into her eyes and held her so close I screamed HOW CAN SHE BE GONE. I remember saying to my dad please fix her because dad’s fix everything and I saw the hurt in his eyes as this is one thing he couldn’t fix for me. I remember the doctor saying to me she is such a perfect little girl and she looks so healthy. In that moment I thought how could you be so incentive when my little girl is lying dead in my arms. Within 10 mins of her dying we were told we needed to leave the resus room as they needed it to be free for anyone else that may need it. I understood this and thought we would be put in a quiet room but instead we were put in a coffee room where the general public, doctors, nurses were in and out getting coffees whilst I held my dead child. I can remember my husband asking the nurses if there was a bereavement suite where we could go and they said there was one on maternity but we couldn’t use it as Darcey didn’t die on maternity. We spent hours in that coffee room before she went for her postmortem. I can remember wiping the blood from her nose as I couldn’t bear to see her body so broken. I held her so tight and I never wanted to let her go. When they came to take her for the postmortem it was like they ripped my heart out. No mother should ever have to hand over her dead child. Until that day I never knew pain could be physical when someone dies, I literally felt my heart shatter. When we left the hospital we had a memory box which was beautiful but very focused on myself, husband and Darcey. There was nothing in it for her siblings. We were given a leaflet on postmortems and the nurse said Sorry for your loss like I had just lost something at the shops. My daughter had died, I was living my worst nightmare those were the last words I wanted to hear.

The pain you feel when your child has died is like no other it is physical and mental. Over the next few days whilst living my worst nightmare, I had to try and settle a twin-less twin and a traumatised little girl who just couldn’t understand where her sister had gone. Whilst dealing with my own grief and my husbands grief I had to try and remain strong for my other children and I set about researching where I could get help for them. I contacted numerous charities, doctors and health visitors for advice on where to get help for my other children. I drew a blank with all avenues as all I kept getting was they couldn’t help my other children as Darcey didn’t die on maternity. I can remember my health visitor bringing me a leaflet on support after a stillbirth. This was just unacceptable and I wasn’t going to give up getting my children the help that they needed. Over night I had to become a researcher, twin – less twin support worker and counsellor to be able to offer my children the support they so badly needed.

When Layla-Grace was admitted into hospital with all of the same symptoms as Darcey I was so terrified and just didn’t know what to do. I spent a month in hospital with her and whilst organising Darcey’s funeral, being right by Layla-Grace’s side and being backwards and forwards for my eldest, I set about creating a charity that would focus on siblings and their grief as I found it so difficult to get help for my other children. When you are a mother your own needs come last and your children’s needs come first. MY children are my life and the only reason I carried on when Darcey died was for my other children. My other children were completely overlooked when Darcey died and everyone focused on myself and my husband. This was unacceptable to me. When my eldest turned to me and said mummy no ones cares about me and I miss Darcey too I just knew I had to do something about siblings being overlooked when their brother or sister dies. I have made it my life long mission to make sure siblings are never overlooked and that everyone understands that siblings grieve just as much as mummy and daddy.

Darcey’s Dream – MY family and siblings matter is Darcey’s legacy. The meaning behind the name is that it would have been Darcey’s final dream for all of her family and her siblings to matter and get the help and support they need rather than everything being focussed on mum and dad.
I setup Darcey’s Dream after witnessing my own children getting completely overlooked and knew that if I didn’t create a charity that didn’t focus on them I knew they wouldn’t of got the help they needed. I never wanted any family or siblings to go through what we went through after losing Darcey. We received little to no help and this will never be acceptable to me. I had created Darcey’s Dream as an organisation by April 2017 just 2 months after Darcey had died. In the may I found out I was pregnant with my little boy Bailey but this still did not stop me getting Darcey’s Dream registered as a charity by June 2017. Darcey’s Dream would not be as big as it is today if it wasn’t for my hard work and dedication. Whilst pregnant with my rainbow baby supporting my husband, supporting my other children and dealing with my own grief I worked tirelessly day and night to build Darcey’s Dream up to where it is today.

Darcey’s Dream provides a wide range of support and services for families with a special focus on siblings. I made sure that Darcey’s Dream does not have tick box system for families to access help. We support all families that have lost a baby or child in any circumstances from miscarriage to older children up to 18 years of age. We support any family member including aunts, uncles and grandparents and we have a special focus on siblings. These services include the following,

Sweet Dreams Sibling memory boxes – These are distributed to hospitals across the North East and now further a field for families that have lost a baby or child through any circumstances. They are given to families on lots of wards in the hospitals. We also supply these boxes to other charities to make sure siblings are never overlooked. These memory boxes are specifically put together to include siblings in making memories. They allow the whole family to make memories and ensure that they all have memories to treasure forever. These boxes are also distributed directly from the charity if families contact us directly

Breathing Monitors – We provide breathing monitors to any family no matter where they live if they have a surviving multiple/ multiples or a rainbow baby following the loss or death of a child.

Sibling Loss Awareness Leaflet – We have created a special leaflet that explains the support that siblings need after the loss of their brother or sister. It is extremely useful for schools and nurseries to ensure siblings get the correct support. We have had such huge demand for these leaflets as there was nothing like this available and other charities include these leaflets from us in their packs.

Sibling Distraction Therapy – Siblings that have lost their brother or sister can access distraction therapy. We fund a number of sessions in the siblings chosen activity to allow them to have an hour of normality a week when everything at home is extremely difficult. They can mix with other children their age, be a child again, have fun, meet other children that have lost their brother or sister and have a distraction for the time that they are there.

Days out short breaks – Families that have lost a child often struggle to spend time together as their grief takes over. We fund days out and short breaks to allow them to have some quality time together without worrying about the cost.

Counselling – We have numerous qualified counsellors that work with children and adults. We fund sessions of counselling for families immediately so they don’t have to go on a waiting list and siblings can access counselling.

24 hour face to face support – We are available 24 hours of the day every single day of the year if a family needs us or requires support. We will visit them in hospitals, hospices or at home where ever or whenever they need us

24 hour telephone support – we are always on the end of the phone for anyone that just wants to talk.

Support Network – We have a huge network of families that offer support to each other.

Psychiatric Help – We can refer directly  to an NHS psychiatrist if a family needs more help without them having to go to their GP.

Twin-less Twin Support – We have extensive training in twin-less twin support and we closely support families that have a twin-less twin.

Bereavement Package – We have created a bereavement booklet that takes families through every step of what happens when a child has past away this includes practical information, informative information and guidance.
School Support – We have worked with hundreds of schools to implement distraction therapy and techniques within schools to make sure siblings are supported from all angles.

Hospital Support – I teach in hospitals across the North East on their bereavement and end of life courses to helps hospitals better meet the needs of grieving families and especially siblings.

All of the above services and support I created to ensure no other family felt the way we did when Darcey died. We honestly felt we had nowhere to turn. I had to create memories for our other children and think of ways to do this whilst living my worst nightmare. No mother should have to do that and siblings should be included in memory making no matter what. The bereavement package was a huge thing for me as when I left hospital clutching a postmortem leaflet and no other information I had to take to the internet to start researching everything. When living your worst nightmare this is the last thing you want to do so this package provides them with all the information they need to know and more. Educating schools and hospitals on sibling loss is something that means so much to me as I am making positive changes to how they deal with sibling loss and the support they provide. I am making sure siblings never get over looked and are supported from every angle. I have worked so hard to distribute sibling memory boxes to all the hospitals across the North East and now further a field.

People describe the work I do as incredible and inspirational, I just do what I do because I have a passion to make sure siblings are never forgotten about. I work 60 + hours a week on the charity to make sure I can support as many families as possible around my other 3 young children. I go out to visit families at anytime of the day or night and I am often on the phone to families till the early hours of the morning offering them support. I never say no to families and I am always there in their darkest hours to talk to or be a shoulder to cry on. The feedback I receive from families is that I go above and beyond for them and they can’t thank me enough.

I have lots of health issues including PTSD, Anxiety, depression, Fibromyalgia and following a life threatening haemorrhage last year I have been extremely poorly as after numerous blood transfusions my blood count is still very low which makes me constantly tired and light headed. My blood pressure is extremely low and I am extremely anaemic. People tell me I need to rest and recover but that goes against who I am. I will always do anything for anyone no matter how bad my health is and I never put myself first as I just want to help others. People often ask me how do I do it and the answer is simple when you are truly passionate and truly believe in something you make it happen no matter what. Even in my darkest days I have to carry on for my other children and for the families that need help and support. Sibling grief is so important to me and I will never rest until everyone understands just how much siblings grieve.

People have often said to me if the world had more people like me it would be a better place. I was once describe as angel on earth. I never accept praise or recognition for anything I do as I just believe it is the right thing to do. It doesn’t matter how much I am hurting as long as my children get the support they need and I can be there for other families every minute of the day, then I have achieved what I set out to do. Even when I won the unsung hero in the community award I didn’t believe I was a hero I just do what I can for anyone to make sure they don’t suffer in silence.

The award was for my girl Darcey not me as she has created a lasting legacy and her short life has had such a huge impact on thousands of families.

I never take no for an answer and that is probably why Darcey’s Dream is at where it is today. We are going from strength to strength and I truly believe we will only get bigger. I hope Darcey is looking down and is proud of what has been achieved in her name. I am currently working on Darcey’s Dream’s biggest project to date which is to create a bereavement suite away from the hospitals to allow families to spend their final moments with their precious little one in a home from home environment. When Darcey died I desperately wanted to take her home one final time and spend the night with her before the funeral, however it wasn’t practical with my other children and my husband didn’t want this so I had no choice but to sit in the funeral directors hours on end with her. If there had be such a thing as a bereavement suite I could of taken her there and spent one last night with her.

I am constantly on the go from the moment I wake to the moment I go to bed and I am on 24 hour call out for families. I am often with families until early hours of the morning and then up again with my own children. I am always looking at different ways to help families and will never just settle. If there is something more I can do for a family I will do it no matter what. Recently at our Easter event we had collected eggs from people to be able to give out to bereaved siblings at our Easter event. At the end of the event there was a number of eggs remaining, the easy option would have been to give them away however I will never take the easy option, I went out till midnight delivering Easter eggs to vulnerable children and adults that wouldn’t normally get an Easter egg. If there is anything I can do for anybody I will do it.

Around running Darcey’s Dream I also help my eldest daughter run a hugely successful campaign on sibling loss awareness called #10lengthsfordarcey. This little girl has given this campaign her all and she is so proud of everything she does in her sisters name. It has taken a lot of hard work and dedication from us both to make the campaign as big as it is today and eventually we are taking the campaign national. Her biggest message is siblings grieve just as much as mummy and daddy. She is fast following the footsteps of her mummy and as a grieving sibling herself she wants to help all other grieving siblings get access to support through her sisters charity.

Nothing will ever stop me from what I do as it is in my blood to help others as much as I possibly can. I will never stop fulfilling my little girls final dream and making sure her legacy helps as many people as possible. Last year when I haemorrhaged and lost 6.5 litres of blood, I was minutes away from dying and had to have 2 blood transfusions. I was in critical care but even from my hospital bed I was messaging families to support them as this is so important to me. I was straight back to family visits within days when I was under strict instructions to rest. I am so dedicated to making sure no family has to go through what my family did, that is why I have never taken a day off since the charity was established even through giving birth to our rainbow baby boy and having severe health problems. I am not one for accepting things that are not right and when I was told people wouldn’t help my children it made me even more determined to find a solution.

The truth about child loss is that every single member of the family grieves deeply. It is so wrong that siblings are ever overlooked through the worst nightmare anyone can face. This is why the work we do at Darcey’s Dream and the work I do on a daily basis is so important. When siblings experience the trauma of losing their brother or sister it has a huge impact on the rest of their lives and can impact on them building future relationships and their mental health. Children’s mental health is so fragile which it is why it is vital they receive the correct support and help at the time of losing their brother or sister.

24 hour support every single day of the year is very important to me as a lot of places that offer support operate in office hours. Death does not work to time frames neither does grief, when you need help and support you need it at that moment not when the office opens at 9am. I will never turn a family away and will always do what ever I can to help that family even if it doesn’t come under our services at Darcey’s Dream. I will never stop making people aware of sibling loss and grief. By helping other the way I do allows me to still be a mummy to Darcey some how whilst supporting families in anyway I can so Darcey’s legacy lives on for ever.

It is really difficult to say I enjoy my work helping others through Darcey’s Dream as I wish more than anything they didn’t need that support and their baby was still with them, but if I can help even in a small way I have achieved what I set out to do. Having faced the lack of support out there myself there is no one more committed to ensuring that no family or siblings ever get overlooked as they all matter. I have created a place where people know they will get the help they need.

I work tirelessly to ensure we help as many people as possible and it hasn’t been easy whilst grieving for my daughter, helping my other children and husband with their grief and welcoming a rainbow baby into the world. I will never stop wanting to make Darcey’s Dream bigger to help more families. My dream would be to fully operative nationwide and eventually worldwide having already had interest from America for our sibling memory boxes.

The feedback I receive about the work we do is more than I could ever have wished for doctors and nurses as well as other charities can’t thank us enough for our memory boxes as the whole family is included. They have struggled in the past to include siblings and we have provided them, with a valuable resource for them to include siblings in memory making and for them to sign post families to us for ongoing support with siblings. I will always put my heart and soul into making a difference in the child loss community by the work I do in Darcey’s Dream and I will always put the families first no matter what. In the child loss community I hope to touch as many families as I can to help them through their journey, that no one should ever have to face and if I can help each one of them in just a small way on their journey then I have achieved what I set out to do. There is no name for a parent that has lost a child or a sibling that has lost their brother or sister that is how bad the loss is. At Darcey’s Dream we strive to be the best we can be in everything we do as Darcey’s Dream doesn’t just mean the world to me it means the world to the whole team. I couldn’t do what I do on daily basis without the support of amazing team who all work really hard. I will never settle and I will always continue to work hard and go above and beyond for families.

Helping others means the world to me, on the twins first birthday which was a very tough bitter sweet day I was running around helping a family organise their little girls funeral whilst juggling a party for Layla-Grace and a birthday cake and presents at Darcey’s grave. I will never say no to a family, it doesn’t matter what is going on in my life I will always be there for them. I never accept any sort of praise or recognition as helping families just comes natural to me around supporting my own family and children. Just to be nominated for this award I was incredibly honoured and humbled. When I found out I was shortlisted I was speechless as I honestly don’t think of myself as inspirational, I just do what I can for anybody that I can. Thank you so much for reading my story and if you would like to vote for me I would be so grateful. You can find out more about the work I do by visiting Darcey’s Dream website www.darceysdream.com and our social media pages on Facebook, Twitter and Instagram @DarceysDream. Lots of love Petra x

What Others Have Said

Petra set up the charity Darcey’s Dream after losing one of her twin daughters at 9 and a half weeks old.  Petra decided to set up Darcey’s Dream in memory of her beautiful twin daughter so that no family or siblings go through what her family went through. She is available 24 hours a day and has been known to go and sit with families in the middle of the night to comfort them and hold their hand. She has recently been training staff in hospitals about how to support families when their children are on end of life care. She is amazing and inspirational in every way!

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