Sunday, 31 August 2014


There are lots of different types of love we experience through our lives. 

When you are born and growing up there is an unconditional love you have for your parents, grandparents, siblings and other close family members. No one teaches you how to love and what love actually means but we somehow know what it is. We learn how safe the family makes you feel both physically and emotionally. Your family accepts you for who you are and will always love you.

We learn ways to express our love to them by observing others. We watch people giving hugs and kisses and saying "I love you" to each other. This then becomes a natural way of life and we sometimes say these words without really thinking about them.

When we start at school we do have a kind of love for our teachers. I remember all of my primary school teachers because they were such a big part of my life. They looked after me for a large period of my childhood and you begin to trust in them and rely on them. When you are very young they are almost like your surrogate family. They will look after you if you get hurt, they show you how to do things and they will even give you a hug when you are sad. 

As you grow up you start to make firm friendships and you grow to love these friends. These friends help you find your place within a group and help you develop your personality and style. If you are lucky you can make friends at primary school that stay with you for the rest of your life. They become almost like family. As a teenager you spend more time with your friends than your family and they help you shape the person you want to become.

You then move on to the first 'love of your life'. Usually this happens during your teen years and some do stay together and go on to spend the rest of their lives together. These people are the first ones that you share all your love with and are the only people that can make you want to leave your family. If you are really lucky all your family will like them as well and in time they will also start to love them in their own way. 

Then the circle begins as you move on to be parents yourself. The love you have for your children is breathtaking. They become your world and you would do anything to keep them safe and protect them from any harm. You begin to see how your parents felt when you were small and you start to see why they acted the way they did. At times you thought they were being unfair and over strict but now you see it through new eyes.
Watching your child develop and grow fills you with pride and the most powerful love there is. 

For those parents who lose a baby or child the love they have is still the same they just don't have their child with them to physically show it to. They still feel pride and love and dream of what they would have been doing. Their arms ache every day to hold their child and to show them the world, they yearn to be able to be doing the everyday things; The school runs, the after school clubs, cleaning up scrapes, wiping away the tears, telling them off. 

You then move on to the part of your life, where I am at, when you become a grandparent. WOW, what an amazing feeling. The love you feel for these little humans is enormous. You can have all the joys of doing things with them but without the worry of having to deal with the every day discipline. You still tell them off and don't let them get away with everything but you are able to do the more fun things. 
Being a nanna is the most awesome thing and at the moment I am proud to be able to say I currently have 4 wonderful, amazing, gorgeous grandchildren. I have 3 beautiful granddaughters that I get to share special moments with and I have a very handsome little grandson who is my angel in heaven. I cant share time with Charlie physically but I do find myself talking to him and telling him things on a regular basis. 

When you look back over your life it is really good to look at all the different people you have loved and continue to love. We don't always tell each other we love each other enough,  Please try and tell your family you love them as much as you can whilst you have them with you. 

I love my family with all my heart and would be lost without them.  

Friday, 29 August 2014


Today has been a lovely day. Me (Ruth & Charlies nanna), Gary (Charlies grandad), Carrie (Charlies mummy), Brad (Charlies uncle) and Josh had a day out in Scarborough. In my last letter to Charlie I told him I would be making him a big sandcastle, well me and his mummy made a few sandcastles all for him.

We also went into the arcades and Gary managed to win a Minion teddy from the grabber machines. I'm sure Charlie would have loved it. Whilst we were making the sandcastles Carrie wrote Charlies name in the sand, it made me go all goosebumpy.

It made me feel sad that Charlie was not able to be with us to be taking part in the fun. It should have been Charlie trying to make the sandcastles and write his name in the sand.

 However seeing Carrie enjoy the day out and to see her smile and hear her laugh was heart warming. We all knew that a lot of what we were doing throughout the day was both for Charlie and for us. Being able to spend time together and honoring Charlies memory is special time. We are all going through the same grief but all in different ways. Sometimes just being together makes it easier to deal with the feelings. We know he is watching us and seeing everything we do. "I hope you were happy with the sandcastles Charlie".

Wednesday, 27 August 2014

Hello Charlie

Hello Charlie,

Nanna Curtis here again. Just wanted to let you know that on Friday nanna and grandad are taking mummy and uncle Bradley to Scarborough for the day. I promise you that we will build a big sand castle for you. I will make sure I take mummy into the arcades to go on the machines and we will try and win you a teddy on the grabbers. I'm sure you will be watching us and sending mummy your luck. 
It will be nice to see your mummy smiling and having a bit of fun. She deserves to smile. I know she must find it so hard doing these things wishing you were with her, but she tries to stay strong for you. We all wish we could take away her hurt but we know that we can't, what we can do though is to try and help her through it and to try and bring a smile to her face whenever we can. Your mum is very beautiful, but you know that, and I'm sure you look down on her face every day.

I have been thinking about you lots lately and miss you so much. Me and grandad did a car boot sale last Sunday to raise money for your charity. We are getting nearer and nearer to raising the £5000 we need to become a registered charity. It makes us feel very proud to do these things for you. There are more and more people out there getting to know all about you. You should feel very proud of yourself for what you have achieved and the changes you have made to other peoples lives. 

Every time we go out trying to raise more money and raise awareness about the lack of bereavement services I feel myself swell with pride as I talk to people about you and how hard you fought to stay here with us. It also makes me feel sad that I don't get to see you now, but the main feeling I have is of immense love and pride for you. 

Mamma Key told me today that on your website page we have recently had a person in Argentina visit it. How amazing is that, some one who lives thousands of miles away, and who none of us know now knows all about you and how wonderful you were. 

Your three cousins have been up for tea today, you would have had such a fun time with them. I can imagine all the mischief you would have all got up too. They miss you lots and talk about you when they visit. They are enjoying taking 'Charlie Bear' out on his adventures and finding different things for him to experience. I know that having Charlie Bear helps them to try and deal with your loss and I often see them talking to him. 

I Will write again soon my special little man

Love you big big millions

Nanna xx

Sunday, 24 August 2014

Our lives changed forever on the 29th December 2012 at 04.11 am. 
Charlie Arthur Curtis wasn't supposed to make his arrival until the 22nd February, his mummy's birthday, but he had other ideas. I think maybe he realised that to be born on his mummy's birthday would be even harder for her to deal with in the future.

Before Charlies birth I had done so much reading up on Potters Syndrome on the internet, and everything I read said that babies born with PS look different to other babies. 
The pictures I saw were quite upsetting and I was worried how I would react. I needn't have worried at all. 
Charlie was the most gorgeous, handsome little boy I have ever seen. He looked like any other baby I had seen, but obviously in my eyes much more beautiful.  
He only weighed 4lbs but he didn't look that small, he fitted perfectly into the crook of my arm. 
He had lovely auburn hair and the cutest button nose. He looked like he was just sleeping and at times I did hope he would just open his eyes and look up at me. 
I remember just staring at him for ages trying to absorb as much of him into my memory as was possible. 
Watching Carrie holding Charlie was such a mixed feeling, she looked so beautiful and proud of her little man , but then I would remember that we wouldn't be taking Charlie home with us. This broke my heart, so how on earth was Carrie dealing with this. How was she finding the strength to keep going.

Life seemed very unfair. How could it be right that such a beautiful, innocent little life be taken away so soon. 

Before Charlies birth I think I was like anyone else, I stressed out about normal things like money and being late for appointments. I got irritated by little things, like missing the bin men. 
Now when I feel myself getting anxious about something I remember my gorgeous grandsons face and realise that in the grand scheme of things its nothing to worry about. 
I think I have become much more patient and relaxed about certain things. I appreciate people and things much more now. The things that used to worry me still worry me a little but now I realise they are really only little worries. 

I am glad that I have changed but I wish that I hadn't. I would have much preferred to be still getting stressed out but able to see and cuddle my grandson. 

Thank You Charlie for making me see the world in a different way.

Friday, 22 August 2014


Having worked for the NHS for the majority of my career I have always been a supporter of what it stood for. 
I still do believe that we have the best health care system in the world. 
Unfortunately I think that over recent years the withdrawl of funds from certain areas, and the over spending on management  rather than front line nurses has led to a less efficient service.
I think that the care we received from the majority of the staff we came into contact with was good, however their were staff we met with that we all thought should have left their job many years ago. We found that some more senior staff were less empathetic and seemed to treat us as if we were an inconvenience. 
They seemed to forget that we were human beings going through the most difficult and emotional time in our lives. I know that staff are always pushed for time and that they are always busy, but we needed someone to be with us to help us make sense of what was going on. 
Carrie was a young 19 year old going through her first pregnancy. She went from being so excited and looking forward to having a baby to finding out the most heartbreaking news. She needed staff to spend time with her to explain everything that was happening and to go through all her options with her, instead at times we felt like we were just being herded in and out as quick as possible. 
One senior nurse specialist made us feel like Charlies life was not worth fighting for. How dare she make us feel like that. This was not her family, this was not her child. She was supposed to be there to give support but she made us feel like all we should be thinking about was terminating the pregnancy. 
Carrie was amazing throughout and despite her young years she always stayed strong in her mind that whilst Charlie was giving a fight then so would she. She grew up very quickly and showed us all what a very strong young lady she had become. I don't think any of us could have felt prouder of Carrie than we did. 
Carries consultant was a nice man and I always remember him saying at the scans not to give up hope. He never gave us false hope but he also never made us think that all hope was gone. 
The midwives we came into contact with on the delivery suite were all really kind but we did say after that we wished they communicated better with each other. Every time there was a change of staff we would have to go through our story with them and several had never heard of Potters Syndrome, so we were giving them information. At times this was ok as it gave us something different to focus on but at other times we didn't want to have to keep going over it. It was hard enough having to go through it let alone having to keep repeating ourselves. 
Our experiences with the NHS after Charlies death and Carries discharge from hospital was a very different story. 
At times it made me feel ashamed to have been part of this institution. I had always been very proud to say I was a nurse and felt good saying I worked for the NHS but some of the experiences we have had have made me feel ashamed of the service.
 I remember at times trying to rationalise the mistakes that were being made and almost making excuses for the staff. Then I would realise that this was my family they were letting down, and they were letting us down so badly. 
I know that it is only a small section of staff we have had bad experiences with and as a whole they do still provide a good service under very difficult circumstances, but the way they let Carrie down should never have happened.
We have now made it our mission to make a change to the services provided to bereaved parents and their families and we will fight until there is a change. We have come up against obstacles and barriers along our way so far but we will not give up or be put off just because it is getting difficult. We know we are asking questions that are making NHS bosses feel uncomfortable but they get paid enough money to make up for a little bit of pressure. At the end of the day it is their job to provide the best possible quality of care and if they are not doing this they need to review their services and make appropriate changes. We have set up a petition on asking for co-ordinated package of aftercare for bereaved families. We need to get as many signatures as possible to get the government to take notice of us and to see we are not going away. If you are reading this please go along and sign our petition and get everyone you know to sign it as well.

Wednesday, 20 August 2014


When we started to set up our charity I don't think any of us had any idea what it would truly involve.
We have all learned as we go along and are still finding things out on at least a weekly basis. 
Initially I think we all thought it would just be about shaking tins and raising money, little did we know how wrong this was (lol). We had to look into the legal side of setting up a charity and then that leads you onto the financial side along with tax and having to have a governing body and rules and regulations. 
Amazingly, I think, we have managed to deal with all these things and are so close to having raised enough money to become a registered charity.  
To think we are just a regular family that has never had any experience in setting up a charity or a business I think we have done an amazing job. 
Along our way we have met up with some truly fantastic people. These people have helped us not only with raising money but have helped us with issues regarding setting up a charity. It isn't until you do something like this that you realise how many good people there are out there. 
We all tend to live quite blinkered rushed lives that revolve around us working, looking after families and ourselves. When something like the loss of a child happens it puts life and the world into perspective. You stop stressing so much about the little things that used to freak you out. 
I know I have been left speechless by the generosity of people. When we were organising our first major fundraising event last year, my car was to be used as the support vehicle, and only a few weeks before the event it failed its MOT. I was devastated, I knew I couldn't afford to have the work done and I didn't know what we were going to do. We all tried approaching companies to see if they could help us. Then we found our saviour. A local car dealer/garage came to our rescue. They agreed to carry out the work free of charge. I remember when I was told this news I actually cried. To think that someone we didn't know was prepared to do this for us was overwhelming. It truly restored my faith in humanity. We have come across so many hurdles during our short time as a charity and to find someone so kind was inspiring. 
This is just one example of the kindness and generosity of people  we have met along our way and we continue to meet some great people who are willing to go out of their way to help us. 

It makes me realise even more that Charlie was here for a reason and his legacy will continue on and on. He may have only been with us for 19 minutes but his life has and will effect so many families now and in the future.

Charlie Arthur Curtis a truly inspirational little boy. xxx

Monday, 18 August 2014

Since Carrie got pregnant with Charlie we have all come into contact with lots and lots of professional people.

 We started off with the lady carrying out the scan which then led us onto nurse specialists and consultant paediatricians.  We have had contact with numerous midwives both before and after Charlie’s birth, different levels of doctors from junior doctors to anaesthetists.

 Most of these people were really nice and treated us with respect and empathy.

 None however could give us any answers as to why this was happening.

 We all expect the professionals to have the answers and to be able to help us to do things to make the situation right.

We couldn't get that. 

This didn't make any sense, how come no one could help Charlie.

 In my head I could understand all the medical jargon that was being used and I understood that there was very little medical intervention that could help. 

But in my heart I was crying out for someone to just tell me what I could do to make the situation better. 

I wanted someone to tell me how we could get Carrie through this without her heart being broken, how we could all come out the other side of this intact, emotionally and physically. 

Saturday, 16 August 2014

Wednesday, 13 August 2014

I find listening to music very therapeutic. It allows my mind to drift off and to almost not have to think. It allows me to escape from the reality at times when I am finding it hard to cope with Charlies loss. Sometimes I like to listen to music to help me think about Charlie and other times I want to listen to music that totally takes my mind away from the reality of life and escape to another world. I hope you enjoy some of my musical choices.

Monday, 11 August 2014


I wonder what color my balloons will be,
but as a nanna it doesn't matter to me.
It can be many colors, I choose red, green and yellow,
I think I will pick a color for a fellow.
I will let that yellow one go to the sky
and it will fly very high.
Until it reaches heaven for a boy
and he will be filled with so much joy.
I will keep the other two balloons for his future brothers and sisters.
And they will be filled with Charlies whispers.
Charlie didn't live very long and so
his mother had to let him go.
He will always be in our hearts,
He will be forever our special sweetheart.
So anytime you see a balloon float by,
think of that someone you love in the sky.

Are there rocking chairs in Heaven
where little babies go?
Do the angels hold you closely
and rock you to and fro? 

Do they talk silly baby talk
to get a smile or two,
and sing the sleepy lullabies
I used to sing to you?

My heart is aching for you,
my angel child so dear.
You brought such joy into my life,
the short time you were here.

I know you're in a happy place,
and in God's loving care.
I dream each night I'm rocking you
in Heaven's rocking chair.

Friday, 8 August 2014

Dear Charlie,

Nanna Curtis here, just wanted to write you a letter to let you know I am thinking of you. I think of you everyday but some days are harder than others.
I often sit here and wonder what you would be doing and what you would look like.
I hope that where ever you are they are treating you well and you are happy. I wish there was a window we could see you through to make sure that you are ok.
I miss being able to see you each day and watch you develop into a young boy. I miss being able to go and buy you little outfits and toys and I often find myself looking at them in shops.
It is currently the summer holidays and I wish I was sitting here planning with your mummy a day trip to the seaside with you both. To be able to watch you playing on the beach and having a little paddle would be so lovely. To be able to take you into the arcades and play on the 2p machines and try and win you a teddy in the grabber machines. I'm still going to go to the seaside with your mummy and we will build a sandcastle for you little man.
Last week me and grandad did a sponsored walk in your memory. There were times when it got very difficult and painful for grandad but each time he felt like stopping he kept thinking of you and it pushed him on to complete it.
It made us feel very proud to tell the people we met on the route about you, and to have the banner on the back of the motor home with your beautiful face on  for everyone to see.
Will write to you again soon
Love and miss you so much little man
Nanna xxxxx

Monday, 4 August 2014

It amazes us a family just how far we have come and what we have achieved since Charlie died, we have raised funds around £3000, set up a charity put on fundraising events such as walk for Charlie 2013, Charity Auction, a family fun day, plus Coast to Coast for Charlie we have also campaigned for better bereavement services in leeds and on a national scale, and  forced Leeds NHS to conduct a review on bereavement serives, we still have a long way to go and lots things we need to achieve along the way and support is vital, there are many ways you can support us there is social media or through one of our events or even your own events, below are just a few ways you can help us and the 1000s of bereaved parents and familys that need help and support
Twitter @Charlie29122012

Friday, 1 August 2014

Today we completed our coast to coast walk for Charlie. The lads have walked 130 miles over a 3 1/2 day period. Day 2 saw them walk from Gisurn to just outside Knaresborough. They made really good time and even found a short cut meaning that they ended the day ahead of schedule. We spent night 3 in a quiet lay by near Green Hammerton. Both men had to endure a cold shower as we couldn't work out how to heat the water (lol). Another good meal of pasta and a cold shandy helped them to both relax. I spent my evening popping Gary's blisters, someone had to do it !! We all slept really well again and were up and ready to go on day 3 by 8am. Day 3 of walking saw us go from Green Hammerton to Malton. We managed to find a lovely camp site, Wolds way caravan and camping, and the kind owner allowed us to stay on the site for a very reduced rate as we were doing a charity event. Thanks go to Derek and Carol Watson and Del for their support and friendliness. The camp was amazing with views all over North Yorkshire. There was also the added bonus of warm showers and a bath. Dan made the most of this and had a shower in the evening and the morning. Gary decided to soak his feet in ice to try and reduce the swelling and aches. It made it easier and less painful as well for me to then sort out the blisters and plasters.
Day 4 our final day of walking and we were up and away just before 8am. Despite the pain Gary was determined to carry on for Charlie. Luckily the route from Malton to Scarborough is generally flat. We arrived into Scarborough at 12.45pm and after meeting up at the harbour car park we all went down onto the beach. Gary took off his boots and just walked out into the sea. Dan didnt even bother to take his boots off. We then went and did as all good tourists do, bought rock, ate seafood and then had fish and chips.
I feel very proud to have been part of this walk and am very proud of Gary and Dan for completing it.