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Families of children with rare diseases welcome Lottery funding

A mother is using photography to show a different side to her eight-year-old son whose rare condition means she has never seen him smile. 

Same But Different Community Interest Company in Flintshire is a not for profit organisation that was established by photographer Ceridwen Hughes from Flintshire whose 8-year old son, Isaac has lived with Moebius Syndrome, an extremely rare condition that affects muscles that control facial expressions and eye-control, from birth. 

They are one of 66 community projects across Wales receiving a share of £250,951 under the latest round of the Big Lottery Fund’s Awards for All small-grants programme. (Full project descriptions can be found here). 

The organisation receives £5,000 to raise awareness of rare diseases and syndromes by developing high-quality profiles and case studies of members and their families who live with rare conditions, and publishing them on the internet. 

Read about Isaac’s friends, 8-year old twins Matthew and Elin Hogg who were born after 26-weeks weighing just two pounds each, on our blogGoes to different website

Speaking about her family’s experience with coping with Isaac’s condition Ceridwen said: “When Isaac was initially diagnosed our whole life was turned upside down. Whilst this was a really hard time it is the relentless need to explain his condition over and again that has been the hardest. We also found that many of the images on the internet were really depressing and not really reflective of people or their personalities. 

“Because Isaac’s condition affects him facially we often feel a need to explain what it is and how it affects him so they do not make assumptions. Isaac has limited speech and can show only a small amount of expression and yet he is also a funny, strong willed, bright and has an amazing sense of humour, he loves football and doesn’t let anything stand in his way! 

“Some people cannot see past the condition and this is very frustrating. It is for this reason I decided to use my skills as a photographer to encourage people to look beyond those first impressions.” 

Welcoming the funding, Ceridwen said: “That’s why I think that Lottery funding being used for projects like this is so important. For children like Isaac and their families, making people more aware that whilst they have rare conditions they are still people who have feelings and being able to live without fear that people are staring at, and judging you is essential. Having Lottery funding goes a long way to making this possible.” 

Elsewhere in North Wales, Ysgol Gymraeg Croes Atti in Flintshire receives £2,932 to develop an after school 'Code Club' using educational and technological resources, based aroundRaspberry Pi computers, to enhance digital inclusion within the disadvantaged Flint Castle ward. In Anglesey, Penucheldre Area Tenants Association will use £3,700 to provide a 30 week programme of activities for residents, to help improve their health and well-being. 

In Powys, Training in Autism Spectrum Conditions receives £5,000 to run a set of training sessions for the parents and carers of young people who are affected by these conditions. Furthermore, A Different Beat will use £4,998 to run multi-sensory drumming workshops for people who are living with dementia and their families to reduce social isolation. 

In South West Wales, The Old Mill Foundation in Swansea receives £4,999 to pilot a community health project within their Holistic Cancer Centre. In Carmarthen, Arts Care Gofal Celf will use £5,000 to hold creative writing and publishing workshops for up to 12 adults who have experienced mental health problems. 

In South East Wales, Horn Development Association Community Interest Company in Cardiffwill use £4,300 to hold a community cohesion football tournament, and in the Vale of Glamorgan, StreetsAhead Productions CIC will use £4,898 to allow volunteers to produce an educational film which will raise awareness and provide help and advice to emergency services personnel and their families regarding the devastating effects of post-traumatic stress disorder and chronic stress related illnesses.

Gareth Williams, Awards for All Programme Manager for the Big Lottery Fund in Wales, said: “Awards for All is having a positive impact throughout Wales. 

“Money is helping to establish groups, societies and clubs, promoting learning, increasing volunteering opportunities and helping to build stronger communities.” 

Available in English and Welsh, application forms are available to download from to different website or by phone on 0300 123 0735.

Further Information: 
Alexander Davies - Big Lottery Fund Press Office: 029 2067 8236 
Public Enquiries Line: 0300 123 0735 Textphone: 0845 6021 659

Full details of the Big Lottery Fund programmes and grant awards are available  
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Notes to Editors:

  • The Big Lottery Fund supports the aspirations of people who want to make life better for their communities across the UK. We are responsible for giving out 40% of the money raised by the National Lottery and invest over £650 million a year in projects big and small in health, education, environment and charitable purposes.
  • Since June 2004 we have awarded over £6.5billion to projects that make a difference to people and communities in need, from early years intervention to commemorative travel funding for World War Two veterans.
  • Since the National Lottery began in 1994, £34 billion has been raised and more than 450,000 grants awarded.
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