It’s been really difficult not to see Amelia. It challenges you on every level, on how to deal with it. Sadly, as parents, you have to make sacrifices, to the benefit of your child who’s vulnerable and at risk.
16 year old Amelia has a neurological disorder, caused by a genetic mutation of the HCN1 gene. As a result, she has epilepsy, severe learning disabilities, movement disorder, sensory processing issues, an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy) and she is non-verbal. Because of her complex needs, she has to have 24 hour care.
Because Amelia is so vulnerable, she has been shielding with her mum at her home in Bournemouth during the Covid-19 pandemic. For four months during lockdown, her dad, Lee, was unable to see her. He talked to us about his experience during lockdown and how he coped with not seeing his daughter.
“It’s been really difficult not to see Amelia. It challenges you on every level, on how to deal with it. Sadly, as parents, you have to make sacrifices, to the benefit of your child who’s vulnerable and at risk. Amelia comes first, and however I manage that emotionally, that’s secondary to keeping Amelia safe. It is an ongoing battle though, but then again, it’s difficult for all dads who are separated from their children.
“I’ve had some great support from Jenny Astall from the Family Support team. I had a call with her a few weeks ago as I’ve been having a bit of a tough time with everything that’s been going on. She reached out to me and we spoke for a couple of hours on the phone - she’s been a great support.
“It’s all part of the service the guys at Naomi House provide, and it certainly does help. Without having that support in place, it would put a billion times more pressure on parents and families to have to cope at any time, let alone during this pandemic.
“I’m still very hesitant and lacking confidence in the restrictions being lifted, because I’m still not sure the world is a safe place to be and Amelia is very vulnerable. Outside of this pandemic, we’re nervous and very cautious anyway, but this situation has increased that hugely.
“I’m not going to put my needs before hers; I’d rather not see her and know that I’m not putting her at any increased risk, but it is difficult.”
Thank you so much to Lee for being so open and bravely sharing his experience with us. To find out more about Lee, Amelia and her family, click here to read their story.