“The hardest part of Batten disease is watching Jeffrey’s ability decline, but his smile and laugh keeps the whole family going.”
Sheryl Lawson, from Accrington, talks about her son Jeffrey, five, his diagnosis with CLN2 Batten disease and how the family focuses on making memories.
Before Jeffrey was diagnosed with Batten disease, our life was just “normal”. Jeffrey was a happy child – he was a joker and loved making people laugh. Jeffrey loved playing football and had a brilliant kick. Life was good.
The first sign we had that things weren’t quite right was when Jeffrey had delayed speech. Then he developed epilepsy. Jeffrey’s movements began to decline too, and his symptoms were a constant challenge to professionals. This was made worse by the arrival of Covid -19 and the pressures it put on the health services. School had also noticed a decline in all aspects of Jeffrey’s life and began to raise concerns.
Eventually Jeffrey was sent for blood tests.
When we got the CLN2 diagnosis, worlds shattered and crumbled around the whole family. This was not the life that we envisaged for our child. The pain we feel is indescribable, with anger and blame all playing their part. Grieving is part of an ongoing process as Jeffrey’s wellbeing declines.
Twinkle in his eye
Now every day is different, there are good days and bad days – although the good days are not necessarily ‘good’ but they are better than the bad. We focus on making memories and keeping Jeffrey happy. The twinkle in Jeffrey’s eye is still there for everyone to see. We appreciate every day for what we are able to have and enjoy.
Impact of Battens
Our family and friends have all been affected by the impact of Battens for Jeffrey and us all, and our community has come together to raise funds for Jeffrey and the BDFA.
I feel so angry at this devastating disease and how cruelly it robs a child of their abilities both physically and mentally. The hardest part of Batten disease is watching Jeffrey’s ability decline, but his smile and laugh keeps the whole family going.