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Shine

Shine provides specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff. Our work is almost entirely funded by the generosity of the general public.

www.shinecharity.org.uk/

Charity

Registered charity no. 249338

Member since July 2021

Latest News

Fortification - Shine Celebrates a Step in the Right Direction

Fortification - Shine Celebrates a Step in the Right Direction

Shine is celebrating this week, after a government announcement that folic acid will be added to non wholemeal flour in the UK as standard.

The announcement comes after years of campaigning by Shine and is backed by long-standing research that shows increasing folic acid intake prior to conception reduces the chances of a Neural Tube Defect (NTD), such as spina bifida or anencephaly.

It will bring the UK into line with over 80 countries around the world who already fortify food. The USA and Canada have fortified for 20 years and have seen a staggering reduction – in some areas by as much as 50% - in pregnancies affected by NTDs.

Shine’s CEO, Kate Steele, says: “Although we firmly believe that all types of flour should have been included in the mandate, Shine is delighted by the Government’s decision to support mandatory fortification of the most commonly consumed flour in the UK with folic acid – a move we’ve campaigned for over many years”.

“In its simplest terms, the step will reduce the numbers of families who face the devastating news that their baby has anencephaly, and will not survive. It will also prevent some babies being affected by spina bifida, which can result in complex physical impairments and poor health.

“It’s over 20 years since the first countries adopted this important public health measure, and started to benefit from a significant reduction in the incidence of pregnancies affected by neural tube defects. Now, at long last, people in the UK will share at least some of that advantage.”

Gill Yaz, Shine’s Health Development Lead, says: “This is such a positive step change in improving public health across the UK for so many, now and in the future. It really is something to celebrate!”

And the benefits are not exclusive to expectant parents and their unborn children. Men are also often low in folate, and many teenagers are clinically deficient in folate, risking their long-term health and increasing their risk of dementia, depression, and anaemia.

Gill continues: “Shine will continue to advocate that all women who might become pregnant should take a daily supplement of folic acid, whether or not they are trying for a baby. Mandatory fortification of white flour, coupled with the recommended supplement of 400mcg of folic acid at least 8 weeks before becoming pregnant, will mean a lower likelihood of an unborn baby being affected by spina bifida or anencephaly.”

Shine remains committed to continued campaigning so that fortification of all flour is made mandatory.

James' Story...

James' Story...

"For the first time I had a better comprehensive knowledge of the condition and immediately felt less anxious and afraid."

What was life like before you received support from Shine?

"James was born in December 2011, eight weeks early. Due to his prematurity, he also had pulmonary stenosis and secundum ASD, which required cardiac outpatient review, no immediate intervention was needed. When James was four months old, he was rushed to A & E as he was lethargic, and his head circumference was enlarged. He was subsequently diagnosed with hydrocephalus (which is managed by a VP shunt) and later with craniostenosis. I felt overwhelmed, scared, and lost. I had never heard of hydrocephalus and the neurosurgeon’s explanation was confusing. Google did not help and just added to my confusion."

How has Shine supported you?

"A friend of my mother’s told us about Shine. I contacted them and the health advisor Marie arranged to visit me at home. She brought a model of a brain and a shunt and explained in layman terms exactly what hydrocephalus was, and how it is managed. For the first time, I had a better comprehensive knowledge of the condition and immediately felt less anxious and afraid. I linked in with other parents on Facebook and established a supportive peer network.

Disability affects the whole family. James has an older sister Grace who was 7 when he was born. Grace was always worried about James. My Support Development worker (SDW) Dolores organized a drama summer scheme for both children with the condition and their siblings, which Grace was able to attend. The week was spent taking part in and working on a stage production of Annie. Grace had the opportunity to act, develop new skills and form friendships with young people with spina bifida and hydrocephalus, and their siblings. She grew in confidence as they learned from and supported each other. Grace could see the potential in everyone and became less fearful of James’ future.

Shine has continued to help me over the years. My SDW assisted me with benefits and provides ongoing advice in relation to other services/entitlements available.

I was given advice/support with James’ statement of special educational needs by Shine’s education advisor Kirsty. He has a full-time classroom assistant. A few years ago, James’ behaviour and concentration were extremely poor at school. The school’s advice was to send him to a special school for a 12-week intense course. I was reluctant to do this. However, with advice and support from Shine (they were able to give me a different perspective on the situation) I finally agreed. It was the best decision I ever made as James responded well and was able to return to mainstream school with much-improved behaviours and concentration.

James has come along way over the years, he is a bright confident young boy. He plays basketball and attends swimming lessons which he really enjoys. He is a popular boy with lots of friends and he loves to show his scars and tell the tales of his surgeries. If anyone in the family mentions an illness he is quick to tell us he's had 4 brain surgeries which always trumps our coughs and colds!

Shine’s help and intervention throughout James life has been invaluable and I cannot say enough fantastic things about the charity and everyone I have encountered from it."