Local Children’s Charity Makes a Difference to Tamworth Girl with Rare Brain Condition

A Tamworth girl with a rare brain condition has been gifted a special car seat to make life a little more comfortable, thanks to local children’s fundraising group, Simon’s Heroes.

Nevaeh Brown (2) was born with Hydrocephalus, a medical condition where excess cerebrospinal fluid (CSF) builds up in the ventricles of the brain. Often described as water on the brain, the water is actually a clear fluid that surrounds the brain and spinal cord. This fluid acts as a shock absorber for the brain and spinal cord, helps deliver nutrients to the brain, removes waste and flows between the skull and spine to regulate changes in pressure in the brain. The brain produces 1 pint of CSF every day, while old fluid is released and absorbed into the bloodstream. If this process is interrupted, the level of CSF can quickly build-up, increasing pressure inside the skull and enlargement of the head.

‘We knew there was a problem when I had my 20 week scan,’ explained Nevaeh’s mum Louise Stroud, ‘the midline of her brain was missing and her head mass was unusually large. I continued to have regular scans throughout my pregnancy but the doctors couldn’t determine the severity of her condition until she was born.’

Nevaeh was delivered by C-section on 2nd June 2015, a team of neurosurgeons were on standby. Nevaeh’s mum and dad, Stefan Brown, recalled how upsetting and stressful it was not knowing how poorly their daughter would be.

Over the ensuing weeks doctors were able to diagnose Hydrocephalus along with a number of other conditions, largely affecting her sight including Optic Nerve Hypoplasia (underdevelopment of the optic nerve), cloudy corneas, and left Iris Coloboma (a hole in her left iris). She also has another brain defect called Polymicrogyria; where the brain develops too many ridges and causes developmental delays, crossed eyes, problems with speech and muscle weakness. She has duplication of part of chromosome 13q, a very rare and severe disorder that causes mental retardation as well as physical defects. Louise and Stefan have since undergone genetic tests but no defective genes were found.

Nevaeh’s symptoms include an unusually large head, poor muscle tone, limited mobility and muscle spasms. Her vision is impaired but she does respond to bright light and vivid colours. She is unable to hold her head up and is currently undergoing physio to strengthen her muscles.

In January this year, Nevaeh underwent surgery to install a shunt, a thin tube that is implanted in the brain which drains away excess fluid. This has helped to reduce the swelling and pressure. Nevaeh’s shunt is made from flexible material which will grow with her up until she is 5 years old, at which point the treatment will be reviewed.

Nevaeh is a beautiful girl, with gorgeous curly brown hair, chubby cheeks and crystal blue eyes.  The severity of her condition will become clearer as she grows, however, she is a generally settled, content baby who still manages a smile and adores the water and trips to the local swimming baths with her mum and dad.

Nevaeh’s diary is very busy with hospital appointments and she makes frequent car journeys. Due to her delicate frame, standard car seats proved awkward to access and didn’t provide sufficient support around her neck. Simon’s Heroes purchased a specialist car seat for her that swivels and reclines, alleviating those issues.

‘Thank you to Simon’s Heroes for your generous gift, the car seat makes it so much easier to get Nevaeh in and out of the car as well as making her journeys much more comfortable.’ Louise Stroud.

Simon’s Heroes began as a simple running and fitness club, which aimed to help worthy causes through sponsored events. The club has now grown into a major charitable organisation with dozens of dedicated members providing funds for children in need. To find out more about Simon’s Heroes visit simonsheroes.org.uk. Alternatively, text HEROES to 70660 to donate £2.

Author: C Bull

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