Working Life: My daughter has an ultra-rare condition 

Lyndsey Walsh, member of the National Patient and Service User Forum and rare disease advocate

Lyndsey Walsh, member of the National Patient and Service User Forum and rare disease advocate. Picture: Mary Browne

6am

Our eldest daughter Arabella usually wakes first, followed by her younger siblings, Aubrey and Callum. It’s a rush to get everyone ready. My husband helps before leaving for work. I’m a full-time family carer for Arabella and I support her to get ready for a morning of summer provision, a home-based programme for children with complex needs. Arabella has an ultra-rare condition called 2q24.2 microdeletion syndrome. She has an intellectual disability, sensory processing differences, and is autistic.

9.30am

I drop Aubrey off at summer camp and Arabella at summer provision before logging in for a virtual meeting with fellow members and volunteers on the organizing committee for the upcoming annual HSE Patient and Public Partnership Conference.

11am

We discuss conference plans and other agenda items for the HSE National Patient and Service User Forum. The forum comprises patients, service users, family members, and carers who are willing to share their experiences with the HSE and participate in service planning, design, and delivery. We collaborate in focus groups, attend conferences and webinars, join committees, and are active in working and steering groups.

Forum participation is voluntary, and my experience has been positive with meaningful engagement to date. I hope to see the ‘Vision for Partnership’ adopted throughout the HSE and partnership embedded into policy. There are many areas of the HSE where true partnership with those with lived experience would be hugely beneficial.

12 noon

After the meeting, I collect Callum from nanny’s house. I’m fortunate to have her help - I know it’s not always available for carers who would like to engage in partnership work.

1pm

Lunch at home before heading out to collect the girls.

3pm

We spend the afternoon in the garden. Everyone is thankful for sunshine.

5pm

We have family dinner when my husband returns from work. Arabella is nonspeaking and communicates primarily using an augmentative and alternative communication (AAC) device. She enjoys this time where she can share some thoughts, feelings and requests for the rest of the week. She asks ‘Want to go for a spin?’, ‘coat’ and ‘Dublin Zoo’. I reply with ‘maybe’ and ‘next month’. It’s on our radar to visit the zoo soon.

• The second annual HSE Patient and Public Partnership Conference 2024 takes place in Dublin Castle on September 24.
• To register, see www.hsepatientconference.ie