Please take time to support this little boy ❤️‍

Langley Ladies Softabll team would like to raise money for this little boy here is his story from his parents

Barnaby House

This is our little boy Barnaby and he was 2 years old in January.

When he was 8 weeks old, he started having seizures and needed to stay in hospital for 12 weeks for testing and treatment. He was diagnosed with infantile spasms which is a rare form of epilepsy. It affects 1 in 2500 children in the UK every year. It can begin anytime from birth to the age of 3 and can be caused by other underlying conditions.

Barnaby has had to have several MRI scans, EEGs and various genetic tests to try and find the reason for his seizures. We have recently been told that he has a rare condition called Focal Cortical Dysplasia where an area of his brain has not formed properly. He is now being considered for brain surgery to help reduce his epilepsy. We are still waiting the results for some of the rarer genetic tests in the hope of finding a cause.

What does this mean for Barnaby?

He has significant developmental delay and can’t do anything that most 2-year-olds can do, such as playing with toys, talking, running or feeding himself.

He requires 4 medications morning and night with emergency drugs where needed and yet he still has up to 70 seizures a day, which occur without any warning. His seizures cause him to suddenly drop and fall and he frequently ends up hurting himself. He has a right sided weakness and is really unbalanced when he walks.

Barnaby has had to have many adjustments made to aid his life from a safe space bed to specialist shoes, a protective helmet and a special chair to strengthen his core and aid his posture.

But he is the most beautiful, cheerful and resilient little boy. He loves cars, swings, swimming and the rides at Paulton’s Park.

We (Charlotte & Kieran his parents) live in Hordle, but we grew up in Ashurst/Marchwood and our families are still there. As Barnaby needs 1-2-1 care, he can only attend nursery once a week, so we work opposite shifts to each other at Southampton Airport to enable us both to care for him. He’s used to be ‘handed over’ in the car park!

We would love to raise some money for two particular items. One is a disability pushchair as he has fast outgrown our existing one. Because his seizures make him tired, we need one that lies flat to enable him to sleep. We would also like to buy a special epilepsy camera for us to help manage him at night. It’s not available through the NHS. As Barnaby’s seizures are silent and can be dangerous, this camera would alert us to any abnormal movements and help determine which of the 3 types of seizures he suffers from, that he is having, so that we can administer the emergency medication if needed.

Life for Barnaby is a constant challenge, and we want to do anything and everything we can do to keep him safe and happy.

We have been so grateful for the support we have received so far and we hope Barnaby’s story can raise awareness of living with epilepsy and the impact it has.

Any help is so appreciated ❤️‍