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“Being a ‘Battens family’ has brought many tears but also many adventures, friends, opportunities and a new perspective on life”

Sarah Dodkin, mother of Finley (9) and Harrison (4) both with CLN3, and Arthur, tells of learning to live for the moment.

Our journey was the same as most other families before March 2017. We saved money for the future, imagined our lives for years and years to come and dreamt of doing lots of amazing things… one day. Then Finley’s diagnosis day arrived and our world was completely turned upside down, we no longer planned for the future but lived for the moment, we decided to do everything we possibly could now and to not look too far ahead.

Diagnosis changed everything

We left home, after a phone call the night before, to go to Addenbrookes to find out why our biggest boy Finley aged six was losing his sight. Nothing could have prepared us for the devastating words we were about to hear, Juvenile Batten disease. Diagnosis day will stay burnt in our hearts and minds forever. Our gene counsellor was a lovely man and gave us lots of time, support and words of advice. Many of these words have seen us through our darkest days and ensured our marriage has survived and become so much stronger.

As we drove away from Addenbrookes together, in silence and filled with fear, we knew our lives had changed forever. But we also knew we had three little boys waiting for us at home that were the same three little boys we had left that morning. They needed routine and stability, opportunities to make as many memories together as possible and that’s what we strive every day to give them.

Lots of tears and memory making

As if hearing the diagnosis wasn’t hard enough we then had to travel around our family and one by one break their hearts like ours had been broken. This was probably the hardest thing we will ever have to do, but we did it together and they could not have been more amazing and strong for us.

Lots of tears were shed that day and there have been many shed since but these have by far been outweighed by the laughter and fun we have all had together. We thank Batten disease for bringing the most unimaginable and sometimes completely exhausting amount of fun into our lives and for bringing our families and friends so much closer together than we ever thought possible.

The next step on our journey was making the decision whether to have our other two little boys -Arthur, four, and Harrison, 18 months old – tested to see if they also had Batten disease. This was a decision we made together and one that we felt would give us at least some clarity on our future. As we quickly learned, there are not many answers that come with Batten disease but this was something we could have control over and then we could plan for our future and know the hand we had been dealt.

We also told our closest friends about Finley’s diagnosis and they were, like our family, an absolute rock of support for us and helped us to start making amazing memories for us all. There was no more ‘we must do that one day’ or ‘we must try to fit that in at some point,’ we were living life at a million miles an hour. And three years later that hasn’t stopped and we love it! We have had some incredible adventures and the memory making just continues to stack up. We are so grateful for our family, friends and community for supporting us to do this and sharing it with us.

A diagnosis for Harrison

So, July 2017 quickly came round and we were both still learning to accept Finley’s diagnosis and anticipating the next step on our journey. We remembered the advice from our gene counsellor and were allowing each other to deal with things differently and at different speeds. We were in it together and this advice was so, so important. We now knew that our baby boy Harrison was also affected by juvenile Batten disease and that our sensitive, crazy Arthur was sandwiched in between his brothers, unaffected from the disease but probably set to be most affected out of all three of our little boys. But, this didn’t stop our fun. The tears came as did the heart-breaking… again, but we had no time to waste on sadness, doubt and fear, there was many an adventure to be had!

Finding our community

Since then our journey has gone from strength to strength. The boys’ school has been an incredible place of support, love and amazing education both academically and in emotional wellbeing for our boys and for us. They have learnt as much as they can about Batten disease and have been supported by some wonderful professionals.

Harrison started school in September 2019 and all three boys couldn’t love school more. We moved house and found our beautiful forever home, safe in the knowledge it could be the home to hold all of our wonderful memories and also be the house we will need throughout our journey.

We found the BDFA and the communities linked with this very small but extremely vital charity. The BDFA gives us the knowledge we need and the opportunity to be with parents on a similar journey to ours. They do so much more than this with supporting research and fighting battles and we know they will always be there for every hurdle we come across.

Going public

The work of the BDFA was the driving force behind the most recent chapter of our journey in September 2019……. the start of our forever ongoing fundraising project – Pedal4memories. This was a huge decision for us as it meant that we would be going completely public with our story and opening ourselves to the world. There were concerns about this, the main one being how to keep our boys protected from their diagnosis as we had decided early on that it’s a hurdle at a time with them and as it stands at the moment they know Finley is losing, and will lose all of his vision but as Harrison is symptom free they know nothing about his diagnosis and that is it at the moment. And that’s enough for us.

But, we trusted our community and we weren’t wrong, we have had an overwhelming outpouring of love and support from our community but they have always kept our boys’ best interests, and our choices, at the forefront of any publicity or messages. We have been gifted wonderful experiences and they have really set our fundraising project ablaze with momentum. We could not be more grateful for this and know that as our journey develops we have a wonderful backing of friends, family and the community.

Living for the moment

We are a Battens family and this has brought many tears but it also has brought many adventures, friends, opportunities and a new perspective on life. We don’t let the label define us, we are proud of it because it makes us who we are but the bottom line is that we are Team Dodkin…. a family living for the moment and loving it.

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