We have had another really great week for our charity.

We have had an article published in the Yorkshire Evening Post which was a really nicely written piece.

The special cot which could help bereaved parents.

Carrie Curtis. 

After her own son lived for just 19 minutes, Carrie Curtis tells Sarah Freeman why she wants to help others

When Carrie Curtis gave birth to her son Charlie she was already prepared for the worst. At 18 weeks, doctors had told the 20-year-old, from Middleton, Leeds, her unborn child had Potter’s Syndrome.

With little fluid in the womb, the prognosis was not good and scans revealed that little Charlie had just one kidney and his heart had developed on the wrong side. Carrie was offered a termination, but decided to carry on with pregnancy, determined that she would not be the one to rob him of the gift of life.

It was a decision she has never regretted and she still treasures the time she got to hold her first child, before he passed away in Leeds General Infirmary. In the end Charlie lived for just 19 minutes, but his legacy has endured for much longer.

Following his death in December 2012, Carrie, along with other members of her family set up a charity Charlies Angel Centre with the aim of offering support to other bereaved parents. The last two years has seen the group undertake a major fundraising effort and their latest challenge is to raise enough money to pay for a CuddleCot for the LGI.

It looks like any other Moses basket, but the specially adapted cot comes with a vital temperature control which helps keep a baby’s body cool allowing the parents to spend more time with their child in those first few hours after they have been bereaved.

“Dealing with the death of a baby is incredibly difficult and if we had been able to use a CuddleCot it would have made a big difference,” said Carrie as she launched the online fundraising appeal. Each cot costs around £1,500 and while they are looking initially to just buy one, they would like to see all hospitals have access to the cots.

“It’s not something anyone likes to think about, but the problem is that in a warm room the baby’s condition can quickly deteriorate and so the baby has to be transferred to and from the morgue. Not surprisingly that is incredibly traumatic for parents to be separated again and again.“The CuddleCot cools the baby and so it allows the family to spend as much time as possible with their child, creating vital precious memories. For some that just means dressing their child, for others it allows them to take photographs, but for all it gives them time.”

Carrie, along with her family, have now launched a fundraising campaign which they hope will pay for at least one CuddleCot at the LGI.

“At the time, I think everyone who has been in a situation like Carrie has, goes on automatic pilot, but we saw what she went through and anything that can make that time more bearable for grieving parents has to be worth it,” says Ruth Curtis, Carrie’s step-mother. “When you go into a maternity hospital you don’t expect not to walk out with your baby.

“I think that was the hardest thing she has ever had to do, particularly because she could hear the cries of other newborns from the delivery suite. Setting up the charity and focusing are thoughts on efforts on specific fundraising campaigns has helped us all deal with what happened.”

While hospitals and maternity units are much better placed at dealing with bereaved parents than they ever have been, support remains patchy. Also, while many families receive immediate help while they are still on the ward, in the days, weeks and months after a death that they often find that there is nowhere else to turn.

When the rest of the world moves on and normal life returns for family and friends that can be when many experience the darkest of days.

“Our ultimate aim is to open a bereavement centre that is open 24 hours a day 7 days a week that will provide relevant information, bereavement counsellors and support so bereaved parents and families can access the support they need, when they need it,” says Ruth.

“No one can take away the pain which comes with the loss of a child. The truth is, grief is a very lonely place, but if we can make it a little easier for just one person we will have succeeded.”

To realise their dream the family is looking to initially raise £100,000, but in the meantime they are doing what they can to support families.

“The ripple effect from the death of a baby is huge,” adds Ruth. “When Charlie died we realised our other grandchildren were really struggling. They had stroked Carrie’s bump, but then there was nothing.

“One day we bought them both a teddy bear, which we called Charlie Bear, and the way they interacted with it really seemed to help. We realised that we might be able to do the same for other children, which is how we came to launch the Charlie Bear Packs.

“The pack, which contains a teddy and a letter from Charlie can be ordered free from the website and all we ask in return is that the family send us a picture of their Charlie Bear enjoying some adventure.”

Charlies Angels Centre recently won a Radio Aire Award for Inspirational Family and Carrie went to collect the award along with other members of the family.

“Those moments are strange, we are all incredibly proud of what Charlie has made us achieve,” says Ruth. “ But of course we would never wished that Carrie had been put into this position. All she wanted was to be a mum to Charlie.”


We also arranged a surprise for our granddaughters, Rhiann  (8)& Amy(7). 
We had heard that Little Mix were going to be visiting Radio Aire to do an interview. Both girls are big fans of the girls.
We have had amazing support from Radio Aire, especially Bethan Davis. 
We decided to contact her and ask if there would be any chance that Rhiann and Amy could get in to meet the band as a 'Thank You' for all the work they have done for the charity and as a treat for everything they have been through.
Bethan worked her magic and got the go ahead for the girls to go in.

This week has been really positive for us, especially with the media.

On Wednesday we were visited by Made in Leeds TV. 

They spoke with Sam and shot a short film for their 'On the Aire' shows which go out at 6pm and 9pm each week.

Sam said she was nervous but the people made her feel a little more comfortable.

We were told that our story would be going out on Thursday evening, so we all sat and watched or recorded to watch later.

The story they focused on for this interview was the work that we are currently doing to raise funds to provide the LGI with a cuddle cot. 

Sam didn't need to have been worried as she came across really well on the screen.

She was able to get over how difficult it is for families going through the loss of a baby and how the topic of baby death is still one that people find uncomfortable and difficult to talk about.

It was very good to see the next day that our website had had 505 views following the screening.

If we go on to help any of these people or they go on to support our campaigns then the anxiety was worth it.

Made in Leeds have also said that they are interested in coming along to our Family Fun Day on the 1st August to film the event to show the fund raising that we do and to give us more publicity.

We have also had contact from the Yorkshire Evening Post, who had seen our current cuddle cot campaign and wanted to do an interview to go into their paper next week.

Luckily with it being a paper the interview could be done over the phone.

They wanted more information about the cuddle cots and how much we were aiming to raise. They also asked for an update on how the charity is currently doing.

The article will be in the Evening Post one evening this week so please keep your eyes peeled.

Finally we were contacted by South Leeds Life newspaper about putting a piece in their July edition. They are due to come out on Thursday 11th June to get our story.

All this media interest really excites us as it gives us a way of reaching a much broader audience.

We know that many people saw the tv show as our social media sites, especially Twitter, had lots of people commenting on the show. 

It feels like a really positive time for us all and I really hope that the interest in us and support we get keeps rising.

I recently went on a course through work that was run by Bereavement UK and Elliott's Footprints. 

The course was to enable me to be better equipped to deal with, help and support any children at the school I work going through a bereavement or loss. I also know it will help me with the work in the charity.

It was quite an emotional day as most of the people on the course could recall events from their own lives or work of going through grief.

At the school I work at the children all know about Charlie and many have helped raise funds for our charity. 

As a result of me being very open about Charlie I have found that children in the school who are going through a death in the family seem to come to me for support.

I think the course has helped give me new ways in which to help support these children and has also made me aware of  physical difficulties these children may present with that are actually linked to grief. 

I have known that everyone experiences many emotional and behavioural changes during grief but it shocked me to see what physical changes grief can do.

There has actually been research conducted that has shown that a person going through the death of a close family member or friend can experience a compromised immune system for up to 2 years after the loss. 

This amazed me as no one really takes into account physical difficulties following a loss. 
This information could really help someone who is not being supported at work or school and feels like people are disbelieving them with their illnesses.

This information, for businesses, could really help the person experiencing difficulties actually getting support and help at work.

They also spoke of how peoples concentration and memory can be seriously affected, both adults and children. 
So when I see a child struggling to concentrate or 'zoning out' it might not be that they had a late night or are just being naughty, they could be experiencing a normal reaction to a loss. 

When you work in a school you get to know the kids that are the ones who do zone out as a way of getting out of a lesson but you also get to know the children that this would be unusual behaviour.

The same must be true of adults in a work place.

I used to love to read and would always read every evening before going to sleep. Since Charlie's death I have found it almost impossible to sit and read a book anymore. I can read a magazine as it is in short bursts. I miss not being able to focus on a book and I thought it was probably down to my age but now, after going on the course I wonder if it my bodies reaction to the loss of Charlie.

Many people underestimate the power of grief and loss and dismiss people who are struggling and say things like "are you not over it yet" or " it was ... years ago now". 

This course has made me look at things quite differently and I think I was very understanding of people grieving but it has still made me question how I see children at school. 

I think this kind of training should be offered to all businesses and schools. 
Everyone knows someone who has or is going through a loss and if they understood its effects more and knew ways to support then maybe more people would be able to cope with their grief. 

Support is vital for people grieving, just knowing that there is someone you can reach out to is sometimes enough to help you keep going.

When I return to work I will be meeting with the other staff members to pass on the information and training I have been given.
This will hopefully make our school even better equipped to help and support our pupils.

I wish that this course had been available to school staff when my granddaughters were struggling with the loss of Charlie. They may have been picked up by staff as children who were in need of support. 

From the beginning of this year I have had a really strong feeling that 2015 was going to be a really good year for our charity.

I don't know why I felt like this but maybe it was Charlie making me feel this and letting me know that things were changing.

Well so far 2015 has been very positive for us.

We were very lucky to be nominated and then win the Radio Aire Award for Inspirational Family.

Recently we have also had more local companies show an interest in us and request our leaflets to place in there businesses.
Two local GP surgeries and a local Chemist now stock our leaflets which is a great way for us to get our charity out to families needing support.

We have also been lucky to be accepted to apply for funding from the Aviva Community Fund. If we are lucky enough to win then we could be granted up to 25.000 of funding.

A huge lift for us had to be the news that the Leeds NHS were employing a Lead Bereavement Midwife to cover the LGI and St James. 
We had the pleasure of meeting with her and feel very positive that changes are going to happen to the support families receive on discharge from hospital. 
We do think that it will soon become apparent that just 1 bereavement midwife will not be enough, but we are happy that there has been a change.
It shows us that the NHS are now taking the subject more seriously and that maybe our consistent campaigning has had an impact.

Our 2015 Family Fun Day is also coming along really well. We have had lots of companies willing to support us by donating raffle prizes and their services. It is looking to be a fantastic day both for having fun but for also raising vital funds for us.

I think that for just a normal family thrown into this journey through grief that we have achieved a phenomenal amount. 

All of us would much rather that we had never had to go through this but we truly believe that Charlie was sent to us for a reason.

Charlie's courage and strength have given us the reason to get out there and keep campaigning and fighting for improvements to the current services available.

If 2015 carries on like it has started then this year will be an amazing year for our charity and will get us much closer to opening the doors to our support centre.

Thank You all for your support so far, keep following us and letting as many people as possible know about us.

I know I keep posting our current campaigns on here but they are so important to us.

If we could secure some funding from the Aviva Community Fund it could mean that we could secure premises to allow us to get our support centre up and running. 

It would also enable us to get the 24 hour telephone helpline running , this would offer support for bereaved parents and families all across the UK.

Our Charlie Bear Packs would also benefit from the funding and allow us to continue to provide packs to children free of charge.

Another of our campaigns could also benefit from the funding;
Our Cuddle Cot Campaign. 
Winning funding would allow us to provide at least one more Cuddle Cot to the local maternity units. 

These Cuddle Cots offer vital time that families need to bond with their child and to allow them to make memories as a family

If everyone of our followers on here, Facebook, Twitter, Linkedin and the websites all voted I am sure we would be in with a good chance of winning.


Please, Please, Please find it in your heart to take a couple of minutes out of your day to vote for us or donate to our Cuddle Cot Campaign.

https://community-fund.aviva.co.uk/voting/project/view/485/

http://www.gofundme.com/Charlie-sCuddleCot

Super Hero Awards

This week has been amazing for our charity.

Firstly, we found out that we had been nominated for the Radio Aire Superhero Award for Inspirational Family.

Just the fact that we had been nominated was amazing, to think that people had taken their time to go and vote for us. 
This means such a lot to us and makes us realise that we are reaching people.

The awards took place at The Bewleys Hotel, Leeds on Thursday 7th May.

Myself and Carrie attended the evening, both feeling extremely nervous and excited. 

We were sat at a table with the sponsors of our category, Ison Harrison. We were made to feel very welcome by the staff of Ison Harrison and they quickly put us at our ease.

They asked us about what we had done and our story. They were then telling us about what they did and told us that if we ever need their help or advice to contact them. (They may regret saying that to us, lol). This meant a lot to us and I am quite sure that I will be contacting them in the not to distant future for their expert advice.

The evening was hosted by Radio Aire's breakfast host Kam Kelly. I had met him once before when I took Charlie Bear into the studio to meet the Radio team. 

The awards then began. 

The first award was for the Cash for Kids Bravery Award. It was won by a little 5 year old local girl who has been battling Neuroblastoma. It was very emotional and as she went up to get her award everyone rose to their feet.

Me and Carrie were getting more and more nervous waiting for our turn.

Then we saw our category come up on the screen, as they began talking it became obvious that we had won the award.

As we went up to get our award we clutched each others hand feeling so nervous. 
We were given a beautiful glass award and a huge box of flowers. As we were having our photo taken we could see on the screen Bethan Davies (Radio Aire News)talking about us and what we have been doing. Bethan has given us such brilliant support over the last 2 years.

It felt surreal to think that all these people were applauding for us. Carrie later described it as a very mixed pride. 
It was fantastic to think that through our tireless work over the last 2 years that we had made a difference and that people were aware of what we had and continue to do. But on the other hand it felt that we would rather not have been there, we would rather be at home playing with Charlie.

Carrie summed it up brilliantly, she said that Charlie was obviously sent to us for a reason, he knew that we would make a difference and wouldn't give up.

Thank you Charlie for giving us that strength.

I felt that the evening was really good for us as it spread our name and cause out to even more people. 
Charlie's story is reaching more and more people, changing the face of bereavement support forever.

Hopefully this will be the first of many more awards that Charlie will win. 
We will continue the fight and will continue to campaign for better bereavement support for every family going through the loss of their baby.

Our Campaigns

I am going to share the campaigns and fundraising ways we have for you all to see and hopefully share with all your friends. 

I know we keep sharing them with you but that is because they mean so much to us and we want to get as many people involved as we can.

Our most recent campaign has been the Charlie Cuddle Cot Campaign, raising money to purchase a Cuddle Cot for the bereavement suite at the LGI. This campaign is so close to our hearts and had we had the opportunity to have access to a cuddle cot when Charlie was born it would have given us all so much more time to spend with him.

                                                  

                  http://www.gofundme.com/charlie-scuddlecot

Another new campaign we have is with the Aviva Community Fund, the voting continues throughout May and then the groups with the most votes go forward to receive grants of anything up to £25,000. This money would be amazing for us as it could enable us to not only get our telephone helpline up and running but could also allow us to rent a property to use as our base.

                                                     

     https://community-fund.aviva.co.uk/voting/project/view/485/

We have also joined up with Gifts for You, where every purchase made through our page raises money for the charity.

                                       

We still have our online petition to the Department of Health asking for changes to the current provisions of bereavement support. The more signatures we get the more pressure it will put on them to review the current provisions. Please go along and sign the petition and ask everyone you know to also sign, it only takes a couple of minutes but could make a lifetimes difference.

https://www.change.org/p/department-of-health-to-ensure-a-coordinated-package-of-aftercare-for-all-families-following-the-loss-of-a-baby-child-which-will-involve-midwives-gps-and-full-support-networks/u/10663649?recruiter=96559660&utm_source=share_update&utm_medium=facebook&utm_campaign=facebook_link&fb_action_ids=10205598782222392&fb_action_types=og.shares

We hope that you all can go along to each of these campaigns and have a look at how important it is for us to raise the funds to open Charlies Angel Centre