“We cherished the pure joy of holding our boy and soaking up the peace.”
Mimi Petty, whose youngest son Bertie died from CLN1 Batten disease aged 4, explains why she set up Bertie’s Helpers and the work they do for other families living with Battens.
Our youngest son Bertie was diagnosed with CLN1 Batten disease a few days after his second birthday. I will never forget sitting in an office at the hospital, overlooking the Houses of Parliament, with a big box of tissues placed worryingly on the table in front of us. Bertie was very upset and distressed at the time and as we were given the devastating diagnosis of Batten disease, the nurse took him for a little walk in his buggy, so we could do our best to absorb the news that our world was crumbling around us.
On the train back to Kent we were in terrible shock. I held my baby tightly and couldn’t believe what he was going to have to go through. There would be no cure and he would lose everything; his eyesight, his ability to sit up and to swallow, to play. I clung onto the neurologist’s assurance that he would always recognise our voices – he would always know his parents and his older brother. That was something.
As predicted, Bertie rapidly declined over the next year and the number of seizures he suffered increased. He did, however, develop that year a boundless love of bouncing! We started off using a Jumperoo and when he got too big for that we sourced a gigantic frame from the US, which took over the entire living room. From the centre, a harness with a bungee was attached and Bertie could bounce for as long as he liked.
Eventually, even the ability to bounce was lost after a long hospital admission and we cherished instead the smiles of recognition he gave as his brother bounded in from school and the pure joy of holding our boy and soaking up the peace, which seemed always to be around him. Everybody noticed this peace, even the streams of professionals who would be in and out of his room day and night.
We lost our beautiful boy in September 2019, a couple of months before his 5th birthday.
I can’t say any more on this as it is still so raw. We gain great comfort from knowing Bertie is in Heaven with Jesus and I can’t tell you how much we look forward to being together again as a family with him there one day.
My husband Andrew and I set up Bertie’s Helpers because we knew how much practical help, in particular, had helped when Bertie was with us. There was never any time to cook in the evenings when drawing up endless medications and helping Bertie through clusters of seizures or choking episodes.
Because families with a child with Batten disease live all over the UK, unfortunately we couldn’t just pop round and leave a home-cooked meal on the doorstep. Instead, we decided to join with the BDFA, who put us in contact with families who are going through a particular crisis, such as a new diagnosis, increase in seizures, a hospital admission, progression of the disease or end of life situations, amongst others. Bertie’s Helpers then arrange a suitable delivery slot for the family and arrange a big food delivery, including good quality ready meals and treats.
If you know of a family with a child with Batten Disease who could benefit from a food delivery from Bertie’s Helpers, please contact: firstname.lastname@example.org who will give you a nomination form to fill out.
We’re so happy to be able to provide practical support in the form of food deliveries to families and very much hope these small gifts help them know they are cared for at a very difficult time. It’s a big comfort to us to know we can be Bertie’s Helpers to these amazing families.