In loving memory of Ada-Rose 

In September last year, we sadly lost my beautiful niece, Ada-Rose, to a rare genetic disorder called Aicardi-Goutières Syndrome (AGS).

During the most difficult time of their lives, Ada and her family were incredibly fortunate to receive the support of a Roald Dahl Nurse named Lucy. Lucy's care, compassion, and expertise were nothing short of life-changing. We will be forever grateful to her.

Roald Dahl’s Marvellous Children’s Charity fundraises to establish specialist nurses like Lucy in NHS Trusts across the UK. There are currently over 200 Roald Dahl Nurses supporting more than 40,000 children and their families but so many more are needed. These specialist nurses are not only experienced medical professionals — they become a trusted part of the family. They are a consistent presence in the child's life from initial diagnosis through to the transition to adulthood services, navigating the family's often-complicated journey through the healthcare system. Their dedication, expertise and guidance helps reduce hospital visits, hospital admissions and consultations and they become a vital lifeline to the whole family, coordinating care and providing emotional support.

In honour of Ada-Rose, myself and a friend are cycling Lands End to John O’Groats, 1,034 miles in 10 days to raise vital funds for this incredible charity — so more families can benefit from the kind of support our family were lucky to receive.

Every seriously ill child deserves a Roald Dahl Nurse.

Please consider donating. Every contribution helps.

To learn more, visit: www.roalddahlcharity.org

You can also see Ada’s story by clicking this link https://youtu.be/dBvHbqzk6aQ