“I sometimes feel jealous when I see friends with their siblings doing things together that I wish I could do with Reece.”

Reece’s 18-year-old sister Alexandra shares her story about the joy of having a new baby brother, and how his CLN2 diagnosis has affected her life.

My name is Alexandra and I am 18 years old and live in the Highlands of Scotland.  My little brother Reece has Battens disease and was diagnosed in 2018.

Even before Reece was diagnosis I was mature for my age and I suppose acted older than my years as we have had a fair few family dramas – with the deaths of my grandparents and cousin – so I have always been aware that life can be unfair and can change in an instant.

Two big sisters

I remember the day Reece was born and how excited I was to be a big sister. Reece was ruined as a baby being the only boy in our house and having two big sisters; we would sit and cuddle Reece for hours or be fighting over pushing his pram. As Reece grew he was a real mischief maker and always up to no good with a cheeky grin on his face and no matter what he did you couldn’t help but smile, he had us all wrapped round his little finger and he still does.

Frustrated behaviour

Reece was very strong for his age and I was often on the receiving end of Reece’s aggressive behaviours. He would hit, kick and throw his toys at me and then come up and give me a kiss and cuddle. Reece’s behaviour went from one extreme to another. 

During this period I spent lots of time shut in my room to keep away from Reece.

And I always feel so bad about that now, as when we learned Reece was losing his sight I understand that he must have been so scared and frustrated, and because Reece couldn’t tell us he was showing us with his behaviours.

Mam was aware that Reece’s behaviour wasn’t typical and Reece was referred for various assessments to see what was going on. In January 2017 Reece had his first seizure while at nursery and I was a bit concerned, but because I hadn’t witnessed it, I didn’t think too much about it. As time went on Reece had more and more seizures. 

At the beginning Mam would get in a wee bit of a flap so I would help calm her and make her cups of tea while she would see to Reece. I became used to waiting for the ambulance crews who were regular visitors to the house. Because of Reece I am now able to deal with seizures and they don’t faze me.

Diagnoses

In 2017 Reece was diagnosed with autism which I suppose helped to explain his behaviour and made life a bit easier, as Reece wasn’t just a badly behaved boy as many people did say. 

As time went on Reece’s behaviour grew more challenging; Reece went from being a happy soul to getting upset and crying and his seizures were increasing. Deep down Mam knew that something was very wrong and had been researching epilepsy related syndromes. But nothing could have prepared me for the Battens diagnosis.

It was a confusing and upsetting time, I felt helpless as there was nothing I could do to make things better for Reece and because Battens is rare we were given limited information and had to go looking for info.

We will never know  

Over the years it has been really hard watching Reece lose all his skills and be totally dependent on my Mam. He still knows my voice but it is hard knowing that he cannot see my face, and I often wonder – does he remember what I look like? Reece called both me and our other sister ‘Coco,’ and we always knew by his tone which Coco he was shouting for. I would give anything to hear him shouting Coco one last time.

I try not to dwell on it but you cannot help but wonder what Reece would be like if he was healthy. Reece was always so active so would he be a great footballer, or he was well known for his tumbling skills so would he have enjoyed gymnastics? We will never know.

We used to joke that when Reece was older he would have a hard time bringing girlfriends home, as having two older, very protective big sisters they would have to meet our approval. The sad reality is Reece won’t grow up to experience these things. So while we still can, we have done lots of wonderful things with him to give him as many experiences as we can.

Life is for living 

It can be difficult to talk to friends about Reece as they don’t understand and typical teenage problems seem trivial in comparison. But I do get that to other teenagers the usual dramas of growing up are difficult.

I feel guilty for thinking it but I sometimes feel jealous when I see friends with their siblings doing things together that I wish I could do with Reece. Often when people ask about Reece I just say he is fine as I’m so aware that people think you’re being negative if you say he’s having a rubbish time.

I think many people think that my life is all doom and gloom but it is not. Our house is filled with love and we all have wicked senses of humour. It’s true what they say – laughter is the best medicine – and we have so much to be grateful for and smile about, and we want to fill Reece’s life with happy times.

For the youngest in the family Reece really has taught us lots. He is so brave and goes through so much and because of this I try not to sit and wallow or feel sorry for myself.  Life is for living to the full and never to take anything for granted.

I am very lucky that we are a close knit family and I can talk to my Mam and sister about anything. Together, no matter what life throws at us, we will get through it.

Reece makes us proud every day and I hope that I’m doing Reece proud too.