Charlie Mortimer Memorial Fund

Registered charity No: 1145715

We are writing this letter fully aware that you will be receiving hundreds of similar ones this year, however, we hope you will read this one and feel able to donate whatever you can for Charlies memorial fund. Very briefly, our third son, Charlie, was born on 11th August 2009. On 13th August 2009 he became very ill, very suddenly and died on the paediatric Intensive care unit at Leeds General infirmary on August 15th. We found out a week later that Charlie died due to a rare metabolic condition MCADD. We were, and still are, truly devastated by our loss. However, we set up living memorial fund in Charlies name to ensure that his short life can continue to have a positive influence on so many lives. We have already raised in excess of 38,000 and in February last year, we became a registered charity. Charlies fund aims to help families in similar situations to our own, families with critically ill children, bereaved parents and families affected by MCADD. The fund has purchased a large book box for the Leeds General Infirmary Paediatric intensive care unit (PICU), to encourage families to read to their very sick children (see above picture). A large part of the money has also refurbished two family rooms in the PICU where we stayed with Charlie and we have also purchased a specialist cot to nurse babies and children with catastrophic brain injury. We have also funded two MCADD conferences organised by CLIMB (www.climb.org.uk), the worlds leading organisation that researches all metabolic conditions, and helps to support families like ours that have been affected by such rare disorders, including MCADD. Since our last auction, we have had another son, Leo. Leo also has MCADD so we have become a family that is living with MCADD on a daily basis and have seen first hand the legacy that Charlie has given all families living with MCADD. Finally, We have also funded two days for bereaved parents run by care for the family (www.careforthefamily.org.uk/bpn). My reason for writing this letter is that we are organising our second fund raising auction night on Saturday 3rd August at The Milton rooms, Malton and we are asking for donations for the evening ANYTHING! Our last auction raised over 8000. Whether it be tickets, signed items, vouchers, hampers, flowers, gifts ANYTHING! We are happy to pick up any donations if you can e mail, phone or post us the details of your donation. We will gratefully acknowledge any donation that you give. Thank you so much for taking the time to read this letter and I really look forward to receiving your response. Yours faithfully, Stephen and Davina Mortimer

8 West Close Swinton North Yorkshire YO17 6SZ www.charlies-angels.org.uk

Prayers for Charlie Mortimer

The Charlie Mortimer Fund

Charlie was born on August 11th 2009 with a rare metabolic condition - MCADD. Since his unexpected death, Charlie's family and friends have raised over 34,000 to help other people in similar situations....... thank you for being part of Charlie's incredible journey. To read more up-to-date information about the Charlie Mortimer Memorial fund, please see www.facebook.com Prayers for Charlie Mortimer or visit the above website. What does the fund aim to achieve? The purpose of Charlie's fund is simple, it is a way of ensuring Charlie's life is a living memorial. The fund aims to help families in similar situations to our own whether that be families affected by a metabolic disease, families that have been bereaved of their children or families that are being cared for on the PICU in the Leeds General Infirmary. Who do we support? Leeds General Infirmary Paediatric Intensive Care Unit Charlie was cared for on this unit and died on 15th August 2009 in their family room. The first project that Charlie's fund enabled was the much needed refurbishment of this room. This room has given families in desperate situations a little more peace and comfort. We have also provided a large book chest to enable parents to read to their critically ill child. Reading books to Charlie was the only thing we felt we could do for him when professionals and machines were doing everything else. 2012 saw the full refurbishment of the second family room and we also purchased a specialist mattress for caring for children and babies with brain injuries; the platform cost almost 4000, a huge amount of money, however, we have been contacted by several families who have used this unit and the lives that have been helped by this one donation make it more than worthwhile! We continue to support the unit as they require, and we receive so much encouragement from families we may never meet,

but have been touched by Charlies little life. Here is an extract from a recent letter (names and dates have been removed to protect confidentiality). ... You do not know us, we have never met. The first time we heard about the tragic story of your precious baby boy, Charlie, was the first time we came into contact with Noahs ark and the mountains of books enclosed. On.... Our first beautiful daughter was admitted to Leeds PICU. She was diagnosed with bronchoilitis a condition that affects babies lungs. For 40 days, she showed so much strength. Courage, bravery and determination. Tragically, her lungs were so damaged that the doctors could not save her. She went to sleep, aged 10 weeks. We wanted you to know that Charlies book box helped us as parents to sit by her bedside day in day out and read her stories. As grieving parents we wanted to let you know that what you have achieved in Charlies memory, helping others, is truly inspiring. Times are hard, we are on an emotional roller coaster, good and bad weeks, but what you show to us is that there is hope and people can come through tragedy. Care for the Family (CFF) As a family, we received much support from this organisation. They have a bereaved parents network and organise various days and weekends around the country for bereaved parents to attend and receive support, enable parents to share their experiences and give time to talk about their lost children. They have a wonderful website (www.careforthefamily.org.uk/bpn) full of useful information for families and friends who have been affected by the loss of a child. Charlie's fund donated a substantial amount of money to Care for the Family to ensure that their invaluable support for parents like us, continues. CFF are very grateful for our support and have been able to use Charlie's Fund money to partly subsidise days and weekends for bereaved parents during 2012. The focus group have agreed to solely fund a day for bereaved parents in 2013. CFF, along with many charities, are struggling to fund such days and were having to cancel 4 days next year we have been able to ensure that bereaved parents in the north of England will be able to have the support of this day on their bereavement journey; this will cost 3250! CLIMB CLIMB are a national organisation working on behalf of children, young people, adults and families affected by metabolic disease. Their purpose is to provide Metabolic Disease specific information, advice and support to children, young people, adults, families and professionals in the United Kingdom and to provide information and support to families worldwide, to fund educational and primary research programmes and to investigate treatments and medical services. With the help of Charlies money, CLIMB have published an MCADD website and are holding an annual MCADD conference. We had the privilege of attending the first MCADD conference in October 2011 and were overwhelmed by the gratitude of families and professionals that attended. The conference was attended by families affected by MCADD, nurses, researchers, professors and Doctors from across the world who shared their MCADD knowledge, experiences and research. We also shared our personal experience of MCADD and were the first to speak at the conference how amazing! Charlies tiny life is having such an inspirational influence. In 2012/13, CLIMB are

also using Charlies fund to improve life for families living with MCADD by changing the main protocols and guidelines and translating them into the major European languages so that families can download copies to take with them on holiday. How does Charlies Fund function? 2012 began with The Charlie Mortimer Fund becoming a registered charity. We were thrilled when we received the paperwork and, although managing a registered charity takes a lot of time and effort, we believe that it will ensure that the fund runs appropriately, legally and safely. We are also now registered with Virgins Just giving website so hopefully this will encourage easier and more secure giving for sponsored events. Sort Code: 40 31 08 Account Number: 41475622 Registered charity number: 1145715 Structure of Charlies Fund: Executive Mrs Davina Mortimer Fund Trustees Dr Matthew Law, Mr Stephen Mortimer, Mrs Kathryn Wileman, Mrs Caroline Cleghorn. Charlies Fund Steering/ Planning group: Ian & Linda Beecham, Christian & Victoria Lewis, Ryan & Wileman, Neil & Amanda Beecham, Nicola & Jason Leek, Elise Gowing, Caroline Ledgard, Joanne Suckling, Jen Riley, Craig & Clare Beecham, Paul & Alex Mortimer, Rebecca Law, Annie Brown. (if you would like to be involved in this group or would like more info, simply send us an email the group meet on a triennial basis to discuss/ plan/ manage/ share and support the fund) How does the fund raise money? We raise money by various means! In the past we have held several concerts, tombolas, summer BBQs, Small stalls, a huge auction, Black Dyke brass band concert, friends and family have run various marathons, climbed the three peaks and cycled coast to coast!! This list is by no means exhaustive! If you feel that you can help support our work in Charlies memory, please dont hesitate to contact us! I have attached a brief breakdown of our finances for your information.

Many thanks for taking the time to read this information Davina Mortimer The Charlie Mortimer Fund Executive