Ottie's story

Ottie was first diagnosed just 3 weeks before her fourth birthday, and 6 weeks after the UK entered its first lockdown in 2020.

After her diagnosis, Ottie was quickly placed on intensive treatment. However, due to COVID restrictions, the family had to be separated, with only 1 parent allowed in the hospital at a time, and sister Audy unable to visit. Mum Lorna described this experience as "truly awful and traumatic, making an already difficult situation much worse."

Ottie appeared to be responding well to the treatment, but after an incredibly challenging 13 months, just 6 weeks before the end of her front-line treatment, Ottie’s parents, Lorna and Nick, received the devastating news that she had relapsed.

Relapse survival rates for Neuroblastoma are very poor, but we tried to stay hopeful and positive.

After undergoing a second round of surgery that included genetic testing of the tumour, Ottie’s cancer was deemed too aggressive to cure however her parents agreed to try a few cycles of chemotherapy.

After 3 cycles of chemotherapy, Lorna and Nick made the heartbreaking decision to stop treatment and focus on making the most of the time they had left as a family.

“Shortly after, we were introduced to the hospice by one of our wonderful Community Nurses, Catherine. The hospice team did everything they could to make us feel comfortable and at home. They decorated the girls’ playroom in full Frozen-themed decor and handpicked the perfect games and activities for them both. The girls called it their 'holiday home,' which made returning for the final time a little easier. During our second hospice stay, we were supposed to go to the Lapland UK experience with friends, but Ottie was too sick to attend. 

“Instead, the hospice arranged a magical winter wonderland experience just for us, complete with Father Christmas himself. The girls spent two hours crafting and playing games, it was such a magical time. Ottie kept saying, “I never want to leave this surprise!”

Lorna described Ottie as a true entertainer:

Ottie was a healthy and happy child. A true entertainer, she loved to make people laugh and would chat to anyone, commandeering any room she entered.

“We knew Charlton Farm was the place we needed to be for Ottie's end of life care, and when the time came, on New Year’s Eve 2021, we checked in for the final time. We spent a long 5 weeks there, and being able to stay together as a family along with visits from grandparents and other close family members was incredibly important.”

Due to COVID restrictions which had been in place through Ottie’s illness Charlton Farm was the only place that the family could all be together and properly support each other.

“While we spent time with Ottie, Audy was able to spend hours in her safe place, the soft play area under the care of the Sibling Team. The relationships she built with that team remain incredibly important to her (and us).”

“After Ottie passed away on 31 January 2022, she was able to stay in the Butterfly Room in the Sanctuary (the hospice's bereavement suite) for 5 more days, allowing our family to spend some much needed and valuable time with her.”

Charlton Farm made an immeasurable difference to our experience, and we will be forever grateful to the entire team.

3 years after Ottie’s death, Lorna and Nick transformed a small outdoor building at Charlton Farm called the ‘Hidden Retreat.’

Lorna explained: “This beautiful little building, set in the hospice grounds, had sadly fallen into disrepair and hadn’t been used for a while. We saw great potential in the space and wanted to restore it to its original purpose, a little haven for children and families. 

Work began in August 2024 to transform it into a woodland sanctuary, inspired by Charlton Farm’s stunning natural surroundings.

Lorna continues; “We hope that people from across the hospice will find solace there, whether it's children and siblings escaping into a different world for a while, parents taking a brief moment of peace and calm, or even staff needing a 5 minute breather. We know that our family would have greatly appreciated this space in different ways during our time at the hospice and knowing how much Ottie would have loved it gives us great comfort as well.

We are incredibly proud and grateful to have helped restore and create this little bit of magic at Charlton Farm.

Many of our family and friends have since and continue to raise funds for the hospice, and we always knew we wanted to contribute in other ways too.”