We're taking part in Hydrocephalus Awareness Week (6th to 12th March 2023) raising vital funds and awareness for Shine.

On Friday the 10th of March we ask you to wear a hat of Hydrocephalus.

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.

Many of their services are entirely funded by the general public's generosity. Your donation helps individuals and families in your local communities across England, Wales and Northern Ireland. Every donation has the potential for a profound impact.

Here's Sumo's Own Kiel's Story:

"At 8 weeks old, Ryder was diagnosed with a chronic condition called hydrocephalus.

Hydrocephalus (Hi-droh-KEH-fa-lus) is a condition where there is an abnormal build-up of excess cerebrospinal fluid (CSF) in the brain. Cerebrospinal fluid is a clear, colourless fluid found within the tissue surrounding the brain and spinal chord, which acts as a shock absorber. It is constantly being made inside the ventricles of the brain and absorbed by blood vessels. It compresses the surrounding tissue and harmfully raises the pressure inside the skull. This can cause serious damage in a number of ways, including learning disabilities, speech vision and memory problems, physical development and epilepsy. Symptoms of hydrocephalus can include sickness, sleepiness, vision problems, poor feeding, seizures, an enlarged head and fixed downward looking eyes (known as ‘sunsetting’).

When RJ started showing unusual behaviours at home, his parents rushed him to hospital where it was discovered that Ryder was experiencing infantile seizures (which are completely different to adult seizures) as a result of fluid and pressure building in his brain. After a series of tests and scans came Ryder’s diagnosis; the reason for this build up of pressure came was caused by a series of conditions: Group B Strep, meningitis and hydrocephalus.

As a result of these conditions, Ryder’s brain was unable to regulate the CSF, which brought on his worrying symptoms. There is no cure for hydrocephalus but there is treatment to manage it. Before he was three months old, Ryder underwent three brain surgeries at Sheffield Children’s Hospital, inserting an EVD (external ventricular drain) into his brain whilst intravenous antibiotics fought the infections to eradicate the infections. Once Ryder’s infection markers were significantly lower and under control, he underwent surgery a second time to remove the EVD to challenge if Ryder was able to regulate CSF by himself. Unfortunately after three days symptoms returned. It was determined that Ryder could not fully regulate the CSF due to the cranial scarring from the infections, which meant he would always suffer from Chronic Hydrocephalus.

A third brain surgery was performed to fit a Ventriculoperitoneal (VP) Shunt which is designed to help regulate and drain this fluid before it causes pressure and other symptoms. This shunt is placed within the right ventricle of RJ’s brain with a valve underneath his skin behind his right ear, and a silicone tube that feeds down into Ryder’s abdomen, where his organs can absorb the excess fluid. As a result of these surgeries, Ryder has two scars on his head and one on his stomach.

Unfortunately, while VP Shunts will allow Ryder the same quality of life as other children, they are not without their risks. They can become blocked or infected, either of which is incredibly serious. If the VP Shunt malfunctions or fail, Ryder must be seen by a neurosurgeon within four hours of the onset of his symptoms; these are very serious and can be fatal.

Group B Strep was the root cause of Ryder’s symptoms and now chronic condition; 4 in 10 women are affected by Group B Strep, but this only causes problems during pregnancy & labour. This is not something that is actively communicated to expectant mothers, and most children exhibit symptoms before or during labour which means they are given antibiotics during labour and after birth to combat this. In rare cases, such as Ryder, it can take up to three months after birth for symptoms to start.

Ryder entered hospital on 25th November 2022 and was eventually discharged on 21st December just in time to celebrate his 1st Christmas at home. Although he will require regular check-ups and maintenance of his VP Shunt, Ryder has flourished since his hospital discharge and continues to do well in his development. Ryder is being closely monitored by an extensive care team across Sheffield Children’s Hospital and Rotherham Hospital, including neurosurgeons, dietitians, physiotherapists, specialist nurses and the immunology team. He continues to surpass milestone after milestone, and despite all that he has been through, is very much the happiest little boy.

Ryder’s parents are working closely with charities including Shine & Harry’s Hat in helping to spread awareness and information of Hydrocephalus and Group B Strep. Permission was also given for Ryder’s blood to be obtained by St George’s University of London towards ongoing research and trials looking to create a vaccine to combat Group B Strep in pregnant mothers, with hope that this can help to prevent other families from experiencing the complications that can arise from it.

In 2023, hydrocephalus awareness week is March 6th to March 12th. Ryder and his parents would like to thank you for helping to raise awareness through Ryder’s hydro-heroic story.

THANK YOU for supporting Shine!