Victoria and Gordon’s daughter Isla was born with a very rare metabolic condition called MADD. Isla required round the clock care and Victoria and Gordon had to take on a relentless feeding and medicine regime. 

The family received support from Home-Start Waverley volunteer Susie, who they say showed them how to see themselves as Isla’s parents, not just her carers. With Susie’s guiding hand, Victoria and Gordon were gradually able to relax enough to see past the condition and fall head over heels in love with their amazing little daughter.

Isla grew into a beautiful, cheeky little toddler, and her parents were able to enjoy her for 23 months. Victoria describes the key role Home-Start played in Isla’s life, and in helping them create so many wonderful memories of their daughter.

Victoria said: “Isla was one week old when we were told she had a life-limiting condition. It’s impossible to convey in words how we felt at hearing this.

Isla’s condition was very rare and one she would not recover from. We’d spent nine months excitedly waiting for the arrival of Isla. She’d only got here, and then we were told she had just weeks to live.

We focused entirely on keeping Isla as well as possible. We were told if Isla got so much as a cold, it could require an emergency hospital admission. My husband and I were constantly exhausted and stressed. Unlike parents of healthy babies, we couldn’t just hand Isla over to a relative and take some time out.

Isla’s needs were complex. Away from the relative safety of the hospital, we found ourselves consumed by meeting her medical needs. We lived minute-by-minute. Isla was tube fed and couldn’t fast. If she did it could prove fatal for her, so her feeds and medications had to be given precisely on time and the timings shifted as she grew.

When Isla was two months old we were offered Home-Start support and were matched with Susie, our Home-Start volunteer. Susie helped to switch our attention from Isla’s medical needs and focus on the cheeky jovial girl she was. She helped us to see Isla as more than a patient.

This support was a game changer. Susie being there as an extra pair of hands was helpful and it was great to have someone to talk to, who was so uplifting, but ultimately what Susie did was enable us to be the best possible parents to Isla.

Susie showed us how to carve out tiny moments in the day, away from the gruelling medical schedule, to bond with Isla and enjoy her. We were so tense and frightened of holding her the wrong way, but seeing how Susie was with her showed us how we could be. We’d become Isla’s medical team, and Susie showed us how to be her parents.

We’ll never forget how Susie helped us to enjoy Isla, and see her for the beautiful and happy little girl that she was. We didn’t have Isla for long, but our time together was so very special and will always be in our memories.

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