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Shine Northern Ireland Newsletter - Spring 2014
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Shine NI PO Box 132, Cushendall BT44 0WAE: [email protected] T: 01733 555988 W: shinecharity.org.uk
NI NewsletterRegistered Charity No. 249338
Spring 2014
Millennium Volunteers Congratulations to two adult members and a young Shine volunteer in NI who received their Millennium Volunteers awards at a ceremony in Londonderry’s Guildhall in December 2013. Karen Meenan, Brian Clarke, and Lea Casey were awarded with the Gold Award for achieving over 200 hours of volunteering. Karen worked in the local NI Hospice Shop; Brian worked with several local organisations; and Lea worked at many Shine events across Northern Ireland.
Millennium Volunteers is a national programme that recognises and encourages young people
to get involved in volunteering activities. If you’re aged between 14 and 25, you can sign up to the programme and show your commitment to volunteering. After your first 50, 100, and 200 hours of volunteering, you’ll get a certificate backed by the Department of Education recognising your work as well as allowing you to see the training and skills you’ve gained through your volunteering. It also gives you something that looks great on your CV, job or UCAS applications.
Karen comments: ‘As a volunteer for The Northern Ireland Children’s Hospice Shop I gained experience in working with members of the public and also working as part of a team. As a volunteer I was helping raise money so the Hospice could provide a range of services for families that need them’. Brian also worked in a number of roles; talking about his experience he says, ‘I gained valuable experience as a volunteer. I enjoyed getting out of the house to go to work and the responsibility given to me in a number of roles. I would definitely recommend it’.
Lea was involved in a range of Shine activities including Cook IT, helping at social events,
and baking for events and Fun days, where she organised a cake decorating activity. We currently have a number of young members and siblings enrolled on the scheme who are working towards their targets. We look forward to hearing their stories in future Newsletters. Shine NI is a partner organisation of the Millennium Volunteers scheme, so please contact Sandra Campbell E: [email protected] T: 02871 359900 if you would like further information.
Karen Meenan Brian Clarke Lea Casey
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Our story by Anna, Neil, Ewan and Megan Our story starts before Megan was born, at our first scan. As soon as the scan was done the sonographer left the room, and instantly we knew something was wrong. More doctors returned, the scan was done again, we were told our baby had hydrocephalus. Our world turned upside down, we were scared, petrified of the unknown. The whole pregnancy was such a blur, endless doctors’ appointments.
A few months later, Megan was born into the world, we instantly fell in love with her. We never registered the sheer size of her head, only this beautiful little girl we were blessed with.Our whole world changed from that moment. Megan had to have surgery on her head to fit a shunt a few days after being born. Life became grey for us, we did not know what the next day was going to bring. All we could do was live day by day and love with all our hearts. We tried to make sense of it all, but it was so much to take in. It just brought so many emotions out of us; love, hate, frustration, anger, we went through so much.
Megan is now four, and in this time every bit of our lives has been affected. Our home had to be adjusted for her needs. Megan has no trunk control, can’t speak or feed herself, she has poor hearing and poor vision, and little brain tissue. Because her head is so big she cannot lift it herself and every bit of equipment has to be made especially for her head. This was a frustrating process, as it’s trial and error when testing equipment out.
Our family and friends have been right by our side and still are every day. We have made wonderful new friends through support groups like Shine. Shine has coffee mornings and family fun days out, where we met families in the same boat, so to speak, as us. It is wonderful and we will always be grateful for that; we were able to talk to other Mums and Dads to get and give advice on all aspects of hydrocephalus.I guess most of all it affected our family life. In so many ways it made us stronger as a family, but also tested us. It will still test us for years to come but we will do as we have done from the very start, take it one day at a time.
A trip to the local shop, as what was a 10 minute trip before, has now become an hour. The car has to be packed with all her feeding equipment, her special pram, just about everything – but honestly that is the easy part. The hard part is when you are in the shop and people stop and stare. It breaks my heart, all I want to do is walk over and say ‘just ask me and I will gladly tell you why my girl has such a big head and a small tube coming out of her nose’ (a feeding tube connects to her food bag, as she is not able to feed herself). We have opened our hearts and minds, as it is not a well-known illness in Northern Ireland, but hopefully more awareness can be raised through stories like ours.
It even affects us as we forget this small girl is still a baby with normal problems, like teething, but because of everything we’ve been through we automatically think it must be her shunt or something to do with the bigger medical problems.
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Staff profile Pamela Dickey, Project Worker I began working with Shine in May 2010 as a project worker under the new Lottery funded programme. It is difficult to believe that nearly 4 years have passed, and a lot has happened in this time.
My background is in social work. Before working for Shine I worked for The Children’s Disability Team for a few years, and I have also worked in supported living accommodation for adults with physical and learning disabilities. Previous to this I worked as a family worker for the YMCA, facilitating programmes for parents and their
children. These experiences have taught me a lot and I feel have benefited me in my role within Shine.
My role as project worker includes developing and facilitating support groups, events and training. Support groups include Carrickfergus, Ballymena and Magherafelt Parents’ group, Belfast, Ballymena, and Cookstown Adult Support groups. We have also organised various events such fun days, summer outings and Christmas parties, along with helping organise professional training days. I also provide a service for individuals and their families across the Northern Trust Area which includes Ballymena, Newtownabbey, around the coast to Causeway and the Mid Ulster area, out to and including Pomeroy. This support is offered to individuals of all ages from birth right throughout the different stages in life. Examples of this work includes support with benefits and seeking financial help, general information regarding spina bifida and hydrocephalus, signposting to services available within your area, and much more. We currently have a Health Advisor and Education Advisor who I work closely with. If you have a query, or would like support or a chat to discuss what other supports we can offer, please feel free to contact me.
For those of you who have attended groups or events, you may have picked up on the fact that I am competitive and like to win when taking part in activities such as Boccia and Archery. I also love to get involved when visiting children’s soft play areas and have a keen interest in any physical activity. I have taken part in a few half marathons for Shine and hope one day to do the full thing.
At home I live with my husband, cat Wendel, who was previously known as Wendy until we realised it was a boy and it already knew its name. The latest member of the family is Geo, my husband’s childhood dog who has joined us for his retirement as he is now 14 years old.
As I said previously, please contact me if you live with the Northern Trust area and would like support or are interested in events or groups. I have met the majority of members within this area but there are still many that I haven’t met.
Pamela DickeyT: 028 2586 1820 M: 07816 966863E: [email protected]
This is our family’s roller-coaster life. Filled with emotions both happy and hard, we had to start at the bottom, climb the big hill to the top, and just go through every ‘loop de loop’. Some are hard like operations, others are the best feeling in the world. When Megan does something new, like being able to clap her hands, for us it can be the greatest achievement.
As a family we are on this ride and we will get stronger and hopefully life will get less stressful, but we would not change our daughter. All we can hope for is to raise more awareness of hydrocephalus as it affects so many families all over the world.
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Thank you to everyone who has so generously donated to Shine NI. Below are photos from two of our presentations.
The Members of Little Fiat Big Adventure. They travelled 1,800 miles in the Fiat and raised £749 for Shine.
Darren McDowell Chairman of Chartered Accountants Ireland Ulster Branch for selecting Shine as his charity for the Christmas Lunch. The total amount raised was £5,500.
If you haven’t already joined us on facebook ‘like’ us today at www.facebook.com/shineUKcharity
Fundraising round-up
Contact details for Shine NICathy McKillop, NI Director ShineE: [email protected] T: 07762 574861Marie McGonnell, Health AdviserE: [email protected] T: 07789 616420Catherine McCurry, Education AdviserE: [email protected] T: 028 9083 0382Postal Address: Shine Northern Ireland, PO Box 132, Cushendall BT44 OWA
First Contact T: 01733 555988
Pamela Dickey E: [email protected] T: 028 2586 1820/07816 966863
Sandra Campbell E: [email protected] T: 028 7135 9900/07789 616451
Irene Kean E: [email protected] T: 028 9042 3067/07525 965434
Dolores Black E: [email protected] T: 028 9081 4116 /07816 966866
Janet Davidson E: [email protected] T: 028 4066 2868
Congratulations Chris Stewart!Chris played for Ireland in the Para-Badminton World Championships. As well as all his own personal successes his team were awarded ‘Team of the Year’ at the District Sports Awards in the Seagoe Hotel. Well done Chris and team!
Events, Events, Events!Time to ShineWe are holding an event on 7th June 2014 in Greenmount. We will have archery, crazy golf, and lots of sports and arts. Watch out for more details in our next newsletter!
Summer SchemeWe are considering running a Summer Scheme with the Belfast Voice and Dance Academy. This would be for 4-18 year olds and their families. The Summer Scheme will run from 11th-17th August. If you are interested in this please contact Dolores Black on the details below.
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