If Matilda had been a twin

With a twin brother

I always dreamed they would be Tilly and Teddy

This Charity Chat is the most emotional for me

Teddy’s Wish

A small charity fighting for answers

About baby loss and SIDS

Please show them your support

And your love

For Eddie

And Matilda Mae

Thank you x

Teddy’s Wish raises funds to further research in to the causes behind SIDS (sudden infant death syndrome), neonatal death and stillbirth and to provide support for grieving families.

How did your charity begin
We set up Teddy’s Wish following the tragic loss of our baby boy, Edward. Our first baby, he was the brightest light to ever shine in our lives. Edward was born on 18th January, 2014. Tragically, 3 months later on 16th April 2014 he left us, a victim of Sudden Infant Death Syndrome (SIDS), formerly known as Cot Death. This was the most devastating loss imaginable and that light was extinguished.
We set up Teddy’s Wish to fund further research into the causes behind SIDS, neonatal death and stillbirth and to support other grieving families.
In short, we want to search for answers and do something meaningful in Edward’s name.

Can you describe a day in the life of your charity?
As a young charity, less than a year old we have lots of work to do! In the past year we have become a registered charity, designed and developed a website and worked with companies and individuals to arrange fundraiser events for Teddy’s Wish. An example event was the silent auction we ran in September last year. We worked with leading designers from the field of architecture, design and fashion who were invited to customise iconic design pieces using the theme ‘A Child’s dream’. Their bespoke designs were subsequently presented in a curated exhibition at designjunction, a trade and consumer show that runs throughout The London Design Festival. Images of their work can be seen here: http://www.jumblebee.co.uk/a-childs-dream

Our main focus at the moment is organising our black tie gala dinner which is going to be held on Monday 23rd November at One Marylebone in central London. The evening is going to be compered and hosted by television historian, Dan Snow, and we are targeting £100,000 to be raised on the evening. We have a dinner committee and we are busy working on the production for the evening, sourcing auction prizes and selling tickets.

How can people donate?
People can donate either via our just giving page: https://www.justgiving.com/teddyswish/ or by sending a cheque to Teddy’s Wish

What more can people do? How can we get involved?
There are lots of ways to get involved and fundraise for Teddy’s Wish. We are currently selling tickets for our black tie dinner in November if you’d like to attend. You can sign up to fitness/endurance events to raise money for Teddy’s Wish either as individuals or a group. Over the past year, we have had supporters take part in events such as The London Marathon, The Berlin Marathon, Hackney Half Marathon, Ride London and the London to Paris bike ride. Teddy’s Wish is a registered partner of Skyline Events who arrange charity fundraising events such as the London to Paris bike ride, Ben Nevis challenge, 3 Peaks Challenge. Other examples of fundraisers can be seen on our website here which includes events that vary from a Christmas bake sale to an online silent auction http://www.teddyswish.org/events/

Other ways to get involved is by following us on Facebook and Twitter to help raise awareness. We know how important social media is and would be so appreciative of a follow or a share!

Any top tips for organising a good fundraising event?
As we are less than a year old, we have a lot to learn but so far the best tips I can advise is to be organised and be informative! Ensure you allow yourself enough lead time and preparation for the event but also use social media for event announcements in the build up to the event to generate excitement and awareness.

What is your charity’s biggest achievement to date?
There is no single moment or achievement that can stand above any other. We are most proud of having achieved so much in such a short space of time. The charity is less than a year old but in that time we have raised in excess of £100,000 and have been able to fund six individual projects, four of which were research projects and two focused on improved bereavement support services. We could not have achieved any of this without the continued support and energies of the friends of the charity who’s own efforts have helped us get this far.

What do you hope to achieve in the short term?
In the short term we are focused on the dinner as we have an ambitious target of raising a further £100,000. We are also working on raising our profile as a charity.

What are your dreams, long term goals for the charity?
Our dream would be to get the answers to why we continue to lose babies and for a dramatic reduction in the numbers lost each year. We cannot know when there will be a breakthrough but we can think of no worthier cause to work hard for.

Infant and baby loss affects the whole community. The power of community is such an important part of how we both grew up and we think that this is the next step for the charity. We are therefore starting to talk to businesses, associations, clubs and individuals within our local and broader community who are moved by the subject of infant loss and how we can work to bring it down in the UK to levels more in keeping with our position as a leading economy on the world stage.

What is the one thing you wish people knew or understood about baby loss or grief?
I would say time is something that I wish people would understand. There is a societal expectation that time will heal all wounds and that one day we will ‘get over it’. You never ‘get over’ grief. Grief never goes away. It simply changes shape and will always be with us.

Do you have a favourite quote or saying?
“We cannot, after all, judge a biography by its length, by the number of pages in it; we must judge by the richness of the contents…Sometimes the ‘unfinisheds’ are among the most beautiful symphonies.”
Man’s Search for Meaning , Viktor Frankl

Who or what is your inspiration?
Eddie is our inspiration. The charity is because of Eddie but it is also for Eddie. We know it won’t bring Eddie back but it allows us to do something meaningful in his name and keep his spirit burning brightly.

This month is #matexp month of action, where do you feel there are gaps in our maternity services?
Budget for staffing. One of the frustrations I had when I was in labour with Eddie was the lack of 1-2-1 care. The hospital I was at were clearly overstretched and had to attend to so many other pregnant women. It felt like unless it was an emergency, they would not attend to me. It was also upsetting that when I was in advance stages of labour, they kept switching over midwifes. So as soon as I established a trusting relationship with one, she was gone only a couple of hours later!

What can we do to make pregnancy, birth and early parenting better for all?
As above, provide a bigger budget for staffing. At each of my ante natal visits, I would often be waiting for hours to be seen as the hospital was so clearly short staffed. For early parenting, it is so important to have the support of the local midwifes and be educated and informed of the risks of SIDS. Whilst we know that there was nothing that we could have done differently with Eddie, I do remember that SIDS was brushed over and not really talked about when the mid-wife came over and the government has stopped funding leaflets that The Lullaby Trust used to provide to new parents.

What more can we do to support bereaved families? Support pregnancy after loss?
We know first hand how critical bereavement support is. It is so important to provide easy access to support, whether that is by phone or in person by professional bereavement counsellors. For friends and family, perhaps the most important aspect of support is remembering to check in regularly and remembering the child who has died. Sometimes you hear “we didn’t want to upset you” as if mentioning Eddie would suddenly remind us. It is the opposite. We always think of Eddie and we also do want to talk about him. He is the most special and wonderful thing to happen to both of us.
Time moves on and everyone has their own life to live but it is important to never forget.

The CONI (care of next infant) programme, provided by The Lullaby Trust helps support pregnancy after loss but this is not available in all parts of the UK and is dependent on where you live. There has to be more funding to provide this to everyone, regardless of where you live.

A charity close to my heart

Sharing many of my own goals

And sadly a similar loss to my own

God bless you Eddie

And Matilda Mae

Fly high x