Dad Simon Harriss, whose daughter has the devastating, disabling rare disease BPAN, explains that despite the progressive nature of Lily’s condition, he feels blessed – and how, for Lily, every day is Father’s Day.
Lily is nine and half now and growing fast. She is tall for her age and wears age 11-12 clothes already. She loves food and managing this is a constant struggle, especially now she is tall enough to reach things for herself!
She is a happy little soul and has a capacity to learn. She can say a few extra words – including her own name – and, if something’s wrong, she blames the dog! She learned to open the front door, which we didn’t realise, and one day let herself out into the road. That was a scary moment. Fortunately Poppy, our Cavapoo, didn’t leave her side. They adore each other and Poppy sleeps on Lily’s bed every night. Lily mainly communicates with pointing, grunts, cries and emotional outbursts. Poppy responds to Lily’s body language – she’ll jump up to me and Sam, but she’ll just stand by Lily’s side. Getting Poppy as a puppy has been fantastic for us as a family, as she and Lily have grown up together and now get in trouble together!
Lily recently got an award at school for concentration. Her attention span is usually seconds, so to sit for 20 minutes was amazing. She got a certificate.
I remember the day we first got Lily’s diagnosis. The doctors tried to break it to us as gently as they could, and in terms of Lily having a shortened life, I remember them saying they would be worried about Lily in her second decade. Now Lily is nine and a half, that is looming. This is when regression can start. Things may change now and we have to start facing what the future may hold. But weirdly, we have more of a positive outlook, as we appreciate what we have now with Lily even more.
We refuse to dwell on the ‘what ifs’. Some people mourn a person before they’ve gone, but we won’t do that.
If Lily didn’t have BPAN, I know she’d be busy making me a Father’s Day card, but I just appreciate the things she can do. We adore the fact that she’s happy.
Every day is Father’s Day for Lily – and Mother’s Day too – because she is happy and loved.
Action, along with the British Paediatric Neurology Association, is funding vital research into BPAN through a £230,000 Research Training Fellowship awarded to Dr Apostolos Papandreou. Donations are warmly welcomed.