We are very pleased to share with our community that the BDFA has successfully secured a grant from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund. Huge thanks to @TNLCommunityFund and @dcmsgovuk for helping us continue to support families who have children and young people with Batten disease.
As you all know, life has been even more challenging during the current pandemic.
Laura Rolph-Willis has an 11-year-old son, Harry, who has CLN7 and talks about the difference the BDFA has made to her and her family during this difficult time.
“Having a child with Batten Disease during this pandemic has been challenging. Overnight all services including school, carers, respite services, face to face medical support disappeared and we were told to stay at home with our son that needs constant, 24 hour 1 to 1 care. That night also bought an anxiety and fear never experienced before as parents. The fear of not being able to get vital food and meds for our family and an anxious wave that hit when Harry displayed a worrying new symptom that we were unsure how to treat!
“Luckily we still had the BDFA. The BDFA came together and supported us when we needed it the most. They helped us get priority shopping slots, they arranged for online meetings with health professionals to discuss how Covid-19 would affect our children and young people and reassured us we could contact the Batten Disease Clinical Nurse Specialist based at GOSH at any point. They also gave us the opportunity to join a zoom coffee morning with other parents once a week. A time where we could speak to families who could relate to exactly how we feel and help us realise that it was normal to feel worried. The online coffee mornings also had the family support officers sat in who could offer advice and support too. Thank you to the BDFA for being there for us through this difficult time.”