SHINE Is a charity that helps people effected by hydrocephalus and Spina Bifida.Not many people know about SHINE as not many people know about hydrocephalus and Spina Bifida. Shine helped Freya and me.

What is Hydrocephalus?

Hydrocephalus is a life long condition in which excess fluid accumulates in the brain which can cause the head to enlarge, the pressure can also cause brain damage, if left untreated it can be fatal. There are three main types of hydrocephalus:

• congenital hydrocephalus – hydrocephalus that's present at birth (1 in 500)-
• acquired hydrocephalus – hydrocephalus that develops after birth
• normal pressure hydrocephalus – usually only develops in older people

What is Spina Bifida ?

Spina bifida literally means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly, and may also be damaged. 70-90% of babies born with Spina Bifida also develop hydrocephalus.

Who is 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. Shine enables people to get the best out of life. As of the 20th October 2011, Spina bifida • Hydrocephalus • Information • Networking • Equality - Shine, became the new name for the Association for Spina Bifida and Hydrocephalus (ASBAH). Shine is a registered charity, which was formed in 1966, initially to help families and individuals affected by spina bifida and hydrocephalus. Today, Shine is a community of 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. Working together throughout England, Wales and Northern Ireland, we strive to overcome challenges and achieve the best for you and your family.

 Freya’s story;

Freya has had many difficulties since she has been born then caught a severe case of measles at 17 weeks old and it was so bad it was touch and go. we have seen many different people to find out why she struggles so much. We felt like we was passed from pillow to post without any real explanation why she was struggling so much and in so much pain and got the feeling no one really knew what was going on. Freya was diagnosed with motor dyspraxia with hypertonia, joint hypermobility, bilateral pes talipes (club foot) and vitamin D insufficiency. Me and dad wasn’t convinced, we knew deep down there was something else that wasn’t getting picked up, so we asked for her to have a MRI scan and we was denied as ‘there was no neurological signs showing’ if she started severely dropping behind at school then they would do one. Freya was struggling at school from day one. Eventually after all the fighting Freya had a MRI scan in July 2018, letter of results came back few weeks later... they found a cyst and excessive fluid on her brain, she was referred to a neurosurgeon at Sheffield hospital. 13th September we saw the surgeon and listening to him tell us she needs brain surgery was one of the worse days of our lives. We didn’t even have a week to process it, In hospital on the 18th September for surgery the following day. Surgeon said the surgery went well, he then went on to tell us her brain was under so much pressure from the fluid it came out like a fountain as they started the operation. We was then told the damage might of already been done as it took so long for the cyst & hydrocephalus to be picked up as she was born with the hydrocephalus, if it wasn’t for us fighting the way we did for a MRI scan then scarily she would of passed away and it would of been a silent killer as she had no symptoms. Freya started her recovery well but 24 hours later she became very ill, she had a infection but the warrior she is she fought through that. It took her 2 months to go back to school part time because she struggles so much with daily life since her surgery. 

Freya will be going back to hospital for another procedure in the next couple months as her neurosurgeon isn’t happy about how she is doing post op. 

freya is the 1 in 500 & she’s our little warrior. 

“ I want to give something back to Shine as they helped me" (Freya)