This is a short blog on the anniversary of receiving Belle’s CLN3 diagnosis to reflect on what the last year has given us.
After searching for answers we received some about Belle. We were devastated.
We needed to find out if the younger ones were affected. We were distraught.
Choosing to keep Belle’s diagnosis to ourselves until we had the complete picture was one of the hardest things – we needed help, and got this from the few very close friends and family we told, but we knew so many would be there for us. Did we do the right thing? We just weren’t ready to share
Jan 23rd was the worst day of our lives … parents should never have to tell their kids these things …
Coming out to everyone with the news about Belle and Robbie’s diagnosis and likely future – relief, sadness, humility, overwhelming … we are blessed to have the people around us that we have
Anger and frustration – how we feel about no cure, no treatment, lack of structured medical support, lack of answers, slow pace of research & development, bullshit bureaucracy
We have found another family – Batten’s families
We are fighters – Batten Fighters Forever – her body may be but our girl is not giving up so there is no way we are going to just sit here and watch our kids die
We are lovers – we love our kids and will make sure they have the best possible lives and best memories to take with them wherever they go. We survive as parents because of the love they give us and our love of each other.
So at the end of this year … we have a different focus and outlook … we feel a lot more pain but are stronger because of that … thank you to everyone that is there for us
Lisa & Andy
19th August 2017