Sunday, 26 June 2016

Due to unforeseen circumstances we have had to cancel our fundraiser that was to be held on the 15th July at The Yorkshire Rose in Guiseley.

We will be rearranging the 24 hour darts and pool tournament for another time but we have already managed to rearrange the Family Fun Day.

Our Fun Day, which we are hosting in collaboration with a good friend Mark Wilson, will now be held on the 31st July at Leeds Corinthians RUFC, Middleton, Leeds. LS10 4AX. There will also be a car boot running alongside the funday.

The event is going to be raising funds for both our charity and Mark's choice of Parkinson's UK. 

Mark has held several successful fundraising events and we are hoping that with both charities organising things it will become a super event.

We have already managed to secure lots of fun activities for the day and will be having our usual stalls. We are always looking for donations to help us out with our stalls especially the Tombola.

We will be joined throughout the afternoon by Peppa Pig, Minnie Mouse and a Minion. The West Yorkshire Police will also be attending with one of their cars.

There will be a bouncy castle, Face Painting and an Ice Cream Van.

We think it is going to be a fantastic day and would love to see as many of you there as possible.

Saturday, 18 June 2016

An Open Letter from Charlie's Mamma

Only a parent understands the powerful bond you have with your child; that absolute undying love you have and that monumental desire that roars like an open fire inside you to protect that child at all costs. It is openly said that a parent will lay down their life for their child, but it is not until you have your own that you truly understand these fierce emotions. Parenting is wearing your heart on the outside of your body. Whatever you imagine it might be like to have your child die, multiply that by about a trillion and you're probably not even close, the soul destroying agony of your child dying is only truly known and understood by those who have endured it.
On the surface it appears society is accepting of this unbearable sadness and people are supportive and open to talking about it. However, I've been surprised by people’s genuine kindness and empathy as much as I’ve been repeatedly shocked & disappointed by their lack of it. It’s necessary for bereaved parents to be able to talk and most of all, be able to talk openly, I've found it’s the only thing which dispels the trauma.
Sure, friends and family have been supportive, but it’s proven to be the case that there is a mandate as for how long their unwavering support, patience, understanding, concern and empathy lasts. The truth is, the situation is so unbearably sad that it becomes incredibly emotionally draining on the other person.
The realisation that they can't fix your sadness sets in, the frustration builds because not even they can see an end in sight, then gradually it starts to impede on the happiness in their life. They haven't lost their child so why should they spend all their time sad about yours?
I will, for the sake of all the other parents out there with empty arms, write ten things I wish people knew about the loss of a child. Maybe one of my ten points might make a difference to a bereaved parent’s life.
1. 12 years on from losing my son and 3 and half years on from losing my grandson I get up every day with the exact same sadness I had the day they died. The only difference is I’m more skilled at hiding it and I’m much more used to the agony of my broken heart. The shock has somewhat lessened, but I do still find myself thinking I can’t believe this happened. I thought that only happened to other people. You asked how I was in the beginning yet you stopped, why? Where did you get the information on what week or month was good to stop asking?
2. Please don’t tell me that all you want is for me to be happy again. Nobody wants that more than I do, but it’s something that can only be achieved with time. On top of that, I have to find a new happiness. The happiness I once felt, that carefree feeling will never return in its entirety. It also helps to have the patience and understanding from loved ones.
3. Please don’t say ‘I want the old Sam back!’ Or, I can see the old Sam coming back! Sam’s not coming back. This is who I am now. If you only knew the horror I witnessed and endured you would know it’s not humanly possible for me to ever be the same person again. Losing a child changes who you are, My views on the world have changed, things that were once important are not now and vice versa. I feel as though you're telling me two things here. Firstly you don't like the person I am and, secondly if the old Sam’s not coming back I'm out of here. By the way there is nobody that misses the “old Sam” more than me!!! I'm mourning three deaths here; my son’s my grandsons and my former self.
4.If you chose to acknowledge my son’s and grandsons birthday or the anniversary of their deaths on the first year, it’s terribly gut wrenching when you didn’t bother to acknowledge the second, third,fourth and so on. Do you think any subsequent birthday or anniversary is not as sad for me? It also says to me in very big neon lights that you've moved on and forgotten about my son and grandson.
5. Please stop with the continual comments about how lucky I am to have my other children or grandchildren Do I say this to you? Then why say it to me? I’ve buried my son and grandson do you seriously think I feel lucky?
6. it’s not healthy to cry in front of my other children or grandchildren? You’re wrong. It is perfectly healthy that they see I’m sad their brother and cousin has died. When someone dies it’s normal to cry. What would not be normal would be for my children and other grandchildren to think “I never even saw my Mum or my mamma sad over Tyler’s and Charlie’s death.” That would paint me in a light that would tell them it’s healthy to hide your emotions when obviously it’s not.
7. I have five children I don’t have four and i have four grandchildren not three If you want to ignore Tyler as my fifth child and Charlie as my forth grandchild go for it but don’t do it for me.
8. There are still some days, that I still want to hide away from the world and take a break from pretending everything is oh so wonderful and I’m all better. Please don’t just assume I’ve thrown in the towel, or worse, actually be so thoughtless as to wonder what’s wrong with me. I’m grieving. It’s mentally exhausting It would be nice if you congratulated me on the state of my family because keeping it together, stable and happy, is hard work.
9. I did notice. To the friends and family that found the entire death and dealing with my sadness all too hard and held secret events behind our backs that were lied about, stopped inviting us to things we had always been included in and slowly ended our relationship thinking I didn't notice.
I did notice. The only reason why I never said anything is because I’m not wasting my words on your shameful behaviour. I am thankful for something though – I didn't waste any more time on people that were capable of such shallowness and cruelty. Please don’t fear. I would be the first one by your side if the same thing happened to you. That should give you some indication of how horrible it is.
10. Grieving for a child and grandchild lasts until you see them again. It’s a lifetime. If you’re wondering how long your friend or family member might be grieving for, the answer is forever. Don’t rush them, don’t trivialise their sadness, don’t make them feel guilty for being sad and when they talk to you, open your ears and listen, really listen to what they’re telling you. It’s possible you’ll learn something. Don’t be so cruel as to give up on them remember it’s not about you it’s about them.
I’ve been left repeatedly heartbroken as friends that I truly loved and never thought would walk away from me tossed me into the too hard basket or – more hurtfully – the crazy basket. Phone calls stopped, text messages stopped, comments on Facebook stopped and I get the same thing every time. “Sorry darling I’m just flat out”, “Let’s catch up soon” and “I miss you.” The list could keep going but I get it. I’m not the type of person either that is going to pursue a friendship I know the other person doesn’t want. Everyone has a conscience and thankfully I don’t have to live with theirs.
You would think there are a lot of articles that raise awareness of the awful process associated with grieving for a child, The sad reality is there just isn't enough said or printed. You seldom hear through the media about grieving for a child and the impact their death has on all the various people involved.
It can destroy a marriage instantly; it can leave siblings hurt, confused and angry. Often siblings are too young to understand, they're angry that their family is not the same and even angrier that they don't recognise their parents. Losing their sibling is bad enough but so much more is lost for these siblings that are never recognised.
You might hear about the gory details surrounding a child’s death in the media but that’s about all. There should be so much more written about this topic, and additionally it should be talked about more openly than it is. I’m disappointed not just for me but for all the other grieving parents in society that this topic is met with so much fear and silence.
The bottom line is people are uncomfortable with the situation and I really don’t know why. My feelings tell me it is such an horrific thing that most people don’t want to know about it. Maybe they fear through knowing so much they might become obsessed with their own children dying. Parents worry enough about their children already. Do they really need the added worry about knowing how your child died?
I’m not sure if it’s a lack of literature around or perhaps that people simply don’t want to read it because it’s so awful and they don’t want to know someone they love and care about it experiencing so much agony. I personally know though, if I found out a family member or friend had been diagnosed with an illness or disease, or worse, their child, I would be on Google immediately finding out more about it and how I could help them the best. So why is it that this doesn't seem to apply with the death of a child?
I hope if you are reading this it gives you an insight about my personal thoughts and helps at least one person understand to some degree what life is like for the bereaved parent, and if you are a bereaved parent than knowing you are not alone

Sunday, 12 June 2016

Since we started the charity back in 2013 we have been privileged to meet some amazing people. 

We have met people from all walks of life and from all over the UK. 

Every time we have hosted an event we have had to be quite ballsy when we have tried to get prizes or support. 
I don't think any of us has found it easy as we have never been in a position where we have had to be like this.

As time has gone on I think we are now getting used to it and even enjoy it lol.

We have also been thrown into the professional world where we have had to attend NHS meetings with the big bosses of the hospitals. 

It was quite nerve wracking to start with but over time we have come to realise that they are normal people, well most of them, and we are there because we have a cause to fight. 

So far we have had reasonable responses from them and have been made to feel welcome at most of them.
We know that at some of these meetings we are telling the people things they don't want to hear and where they are getting things wrong. 

But if we don't do this then nothing will ever change and when we are feeling nervous we just focus on Charlie and this keeps us going.

The biggest part of this experience so far has been meeting the amazing families that have been willing to share their stories with us. We are so honoured that they feel able to open up to us and share their stories of their angels. 

Our ultimate goal is to make sure that no family ever has to go through the loss of their baby or child alone, if this means that we have to personally support everyone of them we will. 

We know that if Carrie had been given the opportunity to get this type of support her grief might have been made a little easier to cope with.

This is why it is so important to us that every family that contacts us gets to speak to one of us and not an answer machine.   

Knowing that there is someone there to talk to you no matter what time of the day or night is so important.

We are trusted with some really sad stories and every time we talk to a parent or family it shows us just how much improvements to bereavement support has to happen.

We are not qualified counsellors but we can talk to families from a parent, grandparent. uncle. aunt point of view. 

We can understand the pain that they are going through. 

Sometimes you need to talk to people who have been through a similar thing as you feel able to talk openly without worrying about upsetting them. 

We found that talking to a stranger was sometimes easier because you didn't want to upset your family and they felt the same about talking to you. 

Now we have 5 fantastic bereavement counsellors on board we are now getting professional help out to families so quickly. 
A lot of families who have come to us have been told that they might have to wait for anywhere between 6 weeks to 18 months for counselling. 
With us families have started their counselling within a week.
These counsellors give their time to us free. 

They are truly wonderful people.

We know that we are just going to keep getting busier and busier but we are happy about that. We want to get our care and support out to as many families as possible.

In an ideal world we would have not had to set up our charity as the support needed by families would have been there but we all know we live in a world of NHS cuts and government strategies. 

Charlie Arthur Curtis will now always have his legacy and many families will be supported because of him.

What an amazing thing to say about our gorgeous little angel.

Monday, 6 June 2016

Sometimes when I am feeling a bit low and struggling with my own emotions I just take a look at my handsome little grandson and think of everything he has managed to achieve.

He may have only been here on earth for 19 minutes but the impact he has made to the provision of bereavement support is amazing.

Last week me and Charlie's mummy, Carrie, went along to Radio Aire and Capital Radio. We met with our friend Bethan Davies who has helped us so much in the past by giving us air time and by joining in with our fight for improvements to bereavement support within Leeds. It was great to catch up and update her on everything we have been doing over the last six months. Carrie was amazing, and this shows great progress for her as she has always found it difficult when it comes to talking in interviews. 

At the end of the interview, when we were just having a chat, Bethan made a comment that made me stop and think. 
She said to us had we ever realised what a huge impact we have had on the NHS and the face of bereavement support.

It's not until someone else points it out and actually says it out loud that you actually think of what you have achieved. For us it has just become our way of life and we don't actually realise how much impact we have had.

Now, when we look at it, we are just an average family who up until 2013 would never have imagined we would end up setting up a charity and taking on the NHS and the Government. We would probably have laughed at people if they had even suggested it.

None of us have any experience at all of running anything, and we have definitely learned on the job. I think that although we are no where near experts in the field we are now able to stand our ground when tackling difficult decisions and people (lol). 

One thing we all do have in common is Charlie and he has made us all very stubborn when it comes to what we are going to achieve. We used to say what 'we would like to achieve', but now we say 'we are going to achieve'. None of us see stopping in our vocabulary and we will continue our campaign until every bereaved family across the UK can access the appropriate bereavement support they need and deserve.

We are always looking for others who would like to come on board our campaign and make the changes happen. 
If you think you would like to join us please get in touch with us either via our website, , or by email

We can always find things for new volunteers to do.