On Saturday 21 June, from 10am-12 noon, we are hosting a coffee morning at Jo Holmes’ house for a suggested £10 per person donation to Reverse Rett (children free). Raffle tickets will also be available on the day! 🎟️

Reverse Rett is a small charity which funds research into treatments for Rett Syndrome.

My daughter Eliza is 14 years old and has Rett Syndrome. She was born in 2011, seemingly healthy, and initially reached most of her developmental milestones. At 14 months, she was saying a few words, sitting up, pointing, waving, playing with toys and feeding herself.

Over the next few months, she lost the ability to talk, wave, point and hold toys, feed herself and hold a cup. She had screaming spells and suddenly became unresponsive to eye contact.

Over 18 months of tests followed, and although brain scans, hearing tests, and genetic screening initially came back clear, she was diagnosed with Rett Syndrome at the age of three. This disorder is characterised by normal development as a baby and then a loss of skills. It is not screened for at birth or in the common genetic tests.

When Eliza was five, she learnt to walk after intensive physio, but now can only walk a few steps with support.

When she was seven, Eliza developed epilepsy, having up to 80 seizures a week.

When she was eight, she underwent gastrostomy surgery for a feeding tube as she was not safely swallowing her epilepsy medication.

When she was nine, both her lungs collapsed and she was admitted to hospital for respiratory failure and was in intensive care on a ventilator for 5 weeks, having two surgeries over this time.

Over the last few years, Eliza’s epilepsy has worsened and she has lost a lot of mobility. She remains non-verbal, and can’t control her hands and arms to dress, wash or eat, so needs 1:1 support to do everything. She has no brain damage and typical understanding for her age, but is unable to make her body do what she wants it to do.

Eliza is the only child in East Lothian with Rett Syndrome. It can affect any family. It is not inherited and happens spontaneously at conception, and occurs in 1 in 10,000 female births. There are presumed to be over 1500 people in the UK with Rett Syndrome, although exact figures are unknown.

There is no treatment for Rett Syndrome. Gene therapy trials are currently taking place worldwide and these treatments could improve Eliza’s life if successful.

Reverse Rett fund scientific research and hold events to empower and educate families about these scientific advances. Please help me raise money to help them do this by coming along to the coffee morning or donating if you can’t make it! ♥️

Saturday 21 June

10am-12 noon

Cherry Trees, Old Abbey Road, North Berwick