“Whenever I speak about Oscar, Batten disease and the impact it has on us, I gain a sense of relief.”
Alex Jealous tells his story of his 8 year old son Oscar’s recent diagnosis with CLN1, and why he set up a virtual pub to give dads space to talk.
Whether it is a cup of tea or your favourite ale, we serve it all. The Batten’s Arms is the BDFA’s virtual pub. Virtual catch ups and daily chit chat on all blokey things. Whether it be football, rugby, gardening, running or most importantly our family.
No judgement
There is a massive stigma surrounding mental health and, in recent years, men’s in particular. This is not to stereotype, but a means to help create a place where all can be laid on the table in your favourite new local, knowing that the men sitting opposite you understand exactly how you are feeling. As families, and especially as parents, we all find it exceedingly difficult to except that the journey we are on is anything but devastating. Yet we all remain hopeful and intent on creating as many happy memories as we can.
At the Batten’s Arms there is no judgment, there is no wrong thing to discuss and it enables us to talk about things we may not wish to burden our partners with for whatever reason.
Talking can help
My personal journey is one I openly talk about, but I rarely express how it truly makes me feel. Not for any other reason than to protect the people around me who are living with the same ordeal.
Oscar is eight and was diagnosed in March 2020 with CLN1 after three years of gradual decline and a lot of uncertainty. If someone were to ask me how it has made me feel, the only thing I could say is numb. But whenever I speak about Oscar, Batten disease and the impact it has on us, I gain a sense of relief. Talking can help massively, but sometimes all you need to know is that someone is there to listen.
Just a chat with newly found friends!
There is no pressure or need for you to join in, just know that friends are there if you ever need them.
More information will be sent out over the coming weeks with the first virtual chat taking place soon. Please feel free to ask any questions or send suggestions.