Story
Maeve and Catherine met while working for Kiwibank in New Zealand! If you called Kiwibank for mortgage advice in 2005, you may well have spoken to one of us 🙂. We remained friends through many a yoga class, night out, vineyard trip, barbecue and late night coffee-shop outing in Wellington.
Eventually Catherine moved back to Edinburgh and later, Maeve to Dublin ... and we now have 7 children between us, and have even managed a family holiday together (and a few trips without husbands & children!)
Our latest trip is to London, to do the Sole Mates Walk to raise money for Reverse Rett.
Catherine's second child, Eliza, developed normally as a baby up until the age of around 2. She then started to lose the ability to wave, point and say words ... and she was eventually diagnosed with Rett Syndrome, a random genetic condition that affects 1 in 10,000 girls.
Now, at the age of nearly 8, she is mostly confined to a wheelchair, is unable to use her hands, suffers from up to 10 seizures a day, is completely unable to talk, and has problems with breathing, sleep and anxiety. She can understand everything that is going on around her, but is unable to let us know what she is thinking or feeling, or even if she is in pain.
On our holiday together on the Antrim coast, Eliza should have been able to run around on the beach and chat and play and make friendship bracelets with her three siblings and Isla, Clíodhna, and Fiadh, but she was unable to do pretty much anything that the other children were doing. The Giant’s Causeway was also pretty challenging in a wheelchair 😌. We hope that one day we can go on holiday together and she will be able to join in with everything, play, argue, and answer back!
The charity Reverse Rett rely on friends and family fundraising to continue the scientific research and possibility of a cure. Please spare anything you can to help Eliza and other girls like her. Xx