Jo and Steve Catchpole from New Mills have designed and built a garden in memory of their daughter Harriet, who died from Sudden Unexpected Death in Epilepsy (SUDEP) in 2024 at the age of 29. The garden aims to raise awareness about epilepsy and honor Harriet's life.
Harriet's struggle with epilepsy
Harriet lived with epilepsy since she was 17. She experienced a mix of epileptic seizures, including tonic-clonic and absence seizures, as well as non-epileptic seizures. This made diagnosis difficult. She was eventually also diagnosed with non-epileptic attack disorder, which was attributed to anxiety. According to Jo, Harriet took this diagnosis badly, feeling that others thought she was 'crazy'. Epilepsy destroyed her confidence, and she struggled with mental health, even attempting suicide in 2020.
Remembering Harriet's joy
Despite her challenges, Harriet lived life fully. Jo recalls Harriet's typical teenage years and her distinctive chicken-like laugh. Jo started running in 2018 and would receive funny texts from Harriet calling her 'weirdo'. These small moments are deeply missed.
Harriet's husband, Steven Lewthwaite, remembers the constant worry during her good and bad phases. He said, "It really did destroy her mental health. After she tried to take her own life, she told me she felt like a burden." He also treasures Harriet's smile that could lift a room and grieves that their three-year-old son won't get to know his mother. Harriet came off all medication to have her son and had only a year with him.
The memory garden
The garden features orange and purple themes – orange was Harriet's favorite color, and purple represents epilepsy awareness. It includes a boat seat with Harriet's favorite book, Private Peaceful by Michael Morpurgo. Jo hopes the garden creates a calm space and sparks conversations about epilepsy's severity. “Epilepsy takes control of every aspect of your life. It impacts all of your thoughts,” she said.
Epilepsy Action's response
Philippa Cartwright, director of fundraising at Epilepsy Action, said: “We are all truly moved by the thought and care that has gone into creating this special garden in Harriet’s memory. Jo, Steve and the rest of the family are truly inspirational.” She noted that epilepsy affects people in many ways beyond seizures, including mental health struggles. The charity offers support services such as a helpline, support groups, and peer support.
Epilepsy statistics and support
Epilepsy affects about one in 100 people in the UK, with around 80 diagnosed daily. Over 37,000 people live with the condition in the East Midlands alone. Epilepsy Action campaigns for better services and provides a freephone helpline (0808 800 5050) and online resources at www.epilepsy.org.uk.
The Arley Hall Garden Festival, where the garden will be featured, takes place on June 27 and 28.
