NI Newsletter

Reg Charity No 249338

Spring 2015

Celebrating World Spina Bifida and

Hydrocephalus Awareness Day
We had a superb day
celebrating World Spina
Bifida and Hydrocephalus
Day at the Guildhall in Derry/
Londonderry.
To mark the day, we hosted
a handshake chain as a
demonstration of support and
acceptance of diversity within
our community, and to celebrate
our members achievements.
Everyone braved the rain to
gather at the Guildhall, where we
were greeted by Lord Mayoress
Cllr Brenda Stevenson and
Shine members were taken on
a guided tour of the Mayors
Office.
Benny Bear joined us on the day to
celebrate and greet members and
supporters, including Pat Ramsey
MLA and Mark Durkin MP who
kindly joined us at the Millemium
Forum. Even though the rain fell,
our members did not allow this to
dampen their spirits and there was
a fantastic celebratory atmosphere
on the day.
Following the Guildhall event,
we enjoyed a family fun day at
the Millennium Forum. The hall

was a hive of activity throughout

the afternoon, with several craft
stalls and entertainment for our
members, including a clown show
which proved very popular with
the children (and the adults!). Jo
Jingles also popped in to entertain
us all and everyone sang along
and enjoyed the activities.
Shines very own Marie
McGonnell held a flower
demonstration assisted by
Mark Durkan, and they both
produced beautiful halloween
flower displays, which were
raffled at the end of the
day. Those in attendance
were able to treat themselves
at our cake sale and were also
able to get fully pampered with
a manicure and reflexology
sessions. We would like to thank
everyone who attended
the events, and those
Benny
who donated items and
Bear
their time to make the
celebrating!
day a great success!

Best wishes to Heather

Heather sadly left Shine NI in November 2014 to new
ventures. We wish her all the best for the future.

Shine NI
PO Box 132, Cushendall BT44 0WA
E: northern.ireland@shinecharity.org.uk
T: 01733 555988 W: shinecharity.org.uk

Raising
awareness
of Shine
Shine NI meets Stormont

As part of Spina bifida and Hydrocephalus

Awareness Week 2014, Shine NI held an
information and awareness morning on
Tuesday 21st October in the Long Gallery,
Parliament Buildings, Stormont.
The event was sponsored by First Minister
Peter Robinson MLA and Pat Ramsey MLA.
Mr Robinson opened proceedings, and having
met many of our members prior to giving his
speech, he remarked how positive each and
every individual was that he had met, and
how each had overcome their own individual
challenges to reach their personal goals.
Mr Robinson was followed by Shine NI
Director Cathy Mckillop, who emphasised
the importance of prevention of neural tube
defects. Following Cathys emotive speech,
four Shine members spoke to the audience
about their life experiences. This included Lisa
Michelle Haddock and Blaise Hughes, who
both have spina bifida and hydrocephalus,
and have been involved with Shine since
birth. Both Lisa and Blaise have been
supported by Shine throughout their lives.
Lisa has completed her education having

gained a third-level education and Blaise

is in the midst of studying to achieve his.
Lisa stated, For as long as I can remember,
support for both my parents and myself has
always been there from the staff at Shine
NI, formerly ASBAH, whether that support
was physical, mental/emotional, or social. I
consider these people as not only staff who
in effect work for me as a service user, but
moreover valued friends.
Maria Mulholland, whose sister Grace has
spina bifida, provided an insight into what it
was like to have a sibling with the condition
and expressed her joy at watching her little
sister grow up and achieve each milestone in
her life.
Kathleen McCallion from Derry/Londonderry,
whose daughter Seanian has spina bifida and
hydrocephalus, provided the final presentation.
She said, For us, being told her diagnosis, we
were honestly completely devastated. Sean
and I feel that its the type of thing that can
either make you or break you. With Shine, I
met Marie McGonnell first; she just reassured
me so much and spoke to me about a lot of
things Shine can do. Shine also provides the
opportunity to meet other children and other
parents that are going through the exact same
emotions as us, and its reassuring to know
that we are not alone.
Seanian also attended on the day, and she
captured the hearts of everyone, with her
infectious laughter throughout the morning!

Its reassuring to know that

we are not alone.
Kathleen McCallion
2

Fearghal McKinney MLA closed the session

and spoke of how amazed he was at how
resilient the speakers had been and what a
fantastic impact members of staff had on the
lives of those they worked with. He also vowed
to address the topic of Neural Tube defects in
the assembly.

Stormont update
Following our Awareness morning in Stormont,
Fearghal McKinney MLA asked the Minister
of Health, Social Services, and Public Safety
if he had considered the fortification of grain
in order to contribute the prevention of spina
bifida. From this question, it was agreed that
the minister would work with Shine in the
future on this motion.

Shines
radio stars

Shines
radio
stars

We were delighted to be chosen as Radio Ulsters

October Charity Appeal and our appeal was
broadcast to mark the end of Spina bifida and
Hydrocephalus Awareness Week 2014 on 26th
October. Local members Kathleen McCallion
and Perpetua ODriscoll had a fantastic time
recording interviews with the Radio Ulster team.
It provided an insight into living with spina bifida
in Northern Ireland and the assistance that Shine
has provided with them. The interviews were
extremely emotive and have raised awareness
of both spina bifida and hydrocephalus to a wider
audience an extremely fitting end to what was a
very busy and successful Awareness Week! For
those who may have missed the broadcast, the
interviews can be found using the links below.
Cathy McKillop W: http://bit.ly/BBCCathy
Kathleen W: http://bit.ly/BBCKathleen
Perpetua W: http://bit.ly/BBCPerpetua

Lloyds funding
for Shines
health project
We were delighted to have received a 4000-grant
from Lloyds TSB Foundation of Northern Ireland
for a health and wellbeing programme, which
will be rolled out in the west of the province
with emphasis on County Fermanagh. The
presentation was made at Stormont by the
Executive Director of the Foundation, Ms Sandara
Kelso-Robb. Ms Robb wished Shine continuing
success with their excellent work, supporting those
in need within the community.

Lloyds Foundation Executive

Director presenting the grant to staff

Mind Your Head

across NI

Six events were organised throughout Northern

Ireland last year to promote mental wellbeing
among our adult members. The events have took
in Ballymena, Newry and Belfast, Dungannon,
Omagh and Derry/Londonderry covering all of the
trust areas in NI.
Members were given the opportunity to learn more
about coping strategies when dealing with stress,
anxiety and depression and to realise they are not
alone when they experience these issues.
Each event was well attended and feedback was
very positive. The events also offered members
the opportunity to meet new people and learn
from one another. We are hoping to host similar
events in the future so keep an eye on our
communications.

Lisas time
to Shine

Lisa Haddock has been an

active member of Shine
throughout the years. Here,
Lisa explains how she has
found living with spina
bifida and hydrocephalus.

If I were to sum up life as a

young adult living with spina
bifida and hydrocephalus in Northern
Ireland in one word, that word would have to
be isolating. Due to my condition, I developed
epilepsy probably as a result of repeated brain
surgeries. This means that I am unable to drive
for the foreseeable future at least. The area of
town I live in is served by an irregular bus service,
making getting around particularly difficult.

I have learned that no matter who you

are or what you are experiencing, you
are as entitled as anyone else to a life
of joy and happiness
Having recently started out on married life, I am
learning a whole new set of life skills, no different
to someone who doesnt have a disability.
Through the various activities planned by our
local staff from Shine, I have been introduced to
services available to support people like myself
and others in my community with spina bifida
and hydrocephalus to improve my independence
and meet other individuals in a similar position to
remind me that Im not alone.
I have learned that no matter who you are or
what you are experiencing, you are as entitled
as anyone else to a life of joy and happiness a
disability does not define who we are; that choice
is ours.
Lisa and others will be carrying out an immense
fundraising challenge on 28 February, virtually
spinning from her home town of Antrim to Shines
head office in Peterborough, which is a total of
420 miles! If you wish to support Lisa and her
team, please contact Cathy McKillop
E: cathy.mckillop@shinecharity.org.uk
4

Fundraising
update

We have had a fantastic few months of

fundraising events occurring across the country,
from Concerts to Prize Sheep Celebrations! Many
thanks to everyone for organising events and
to those who donated and gave so generously.
A huge thanks also to all our schools and
businesses that held a Wear Yellow and Shine
day as part of Awareness Week 2014. Lots of fun
was had by everyone and all proceeds will be
used by Shine NI to ensure that we can continue
to provide services to people affected by spina
bifida and hydrocephalus.

Changes to contact details

As many of you will be aware landline numbers
are no longer in use, so please contact staff
on their mobile numbers or by email on the
following:
Cathy McKillop, NI Director Shine
E: cathy.mckillop@shinecharity.org.uk
T: 07762 574861
Dolores Black
E: dolores.black@shinecharity.org.uk
T: 07816 966866
Catherine McCurry, Education Adviser
E: catherine.mccurry@shinecharity.org.uk
T: 07789 616486
Marie McGonnell, Health Adviser
E: marie.mcgonnell@shinecharity.org.uk
T: 07789 616420
Janet Davidson
E: janet.davidson@shinecharity.org.uk
T: 07764 969747
Pamela Dickey
E: pamela.dickey@shinecharity.org.uk
T: 07816 966863
Postal Address: Shine Northern Ireland,
PO Box 132, Cushendall BT44 OWA
If you havent already joined us on
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