#TeamNimmy

Raising funds for research into Langerhans cell histiocytosis (LCH)

Nimmy was nine years old when in June 2019 she was diagnosed with Langerhans cell histiocytosis (LCH). Her mum Anu shares her story…

In spring 2019, we were just a normal, busy family of six. That is until our daughter Nimmy started complaining of back pain. We took her to see a physiotherapist friend, and they encouraged us to see the GP. We weren’t apprehensive and thought it might be a pulled muscle, but we went to a music festival for the weekend, where Nimmy’s back grew worse. She couldn’t walk over uneven ground without being in pain, so Nimmy’s dad, Andy, dropped her and me off at A&E in Oxford on the way home from the festival.

Her X-ray and blood tests were clear, but we were kept in overnight for an MRI the next day. A few hours after the MRI, we were told that Nimmy had a tumour on one of her vertebrae, and we were admitted for a couple of nights. A biopsy was quickly done, and 10 days later, we met our consultant, Dr Mitchell, who confirmed she had Langerhans cell histiocytosis (LCH).

Nimmy was diagnosed just after her ninth birthday in June.

Initially, we were relieved to be told that she had single-site, single-system LCH, and the team was hopeful that the only treatment she would need would be the biopsy surgery itself. LCH is unique in that some sites can resolve themselves after surgery. This was the case for Nimmy’s spinal tumour. Unfortunately, in January 2020, we discovered that Nimmy had another lesion and soft-tissue tumour, this time on her skull.

We decided with the team to start chemotherapy, which she did just a couple of weeks before the country went into lockdown in 2020. She had her treatment as part of the LCH-IV trial, which is a Europe-wide study looking at how to improve outcomes for children with LCH. Her treatment was randomised to six months, but we made the decision, along with the medical team, to give her another six months of maintenance chemotherapy. She finished treatment in March 2021.

Later that summer, we found patches of skin involvement LCH which we’ve been treating with steroids. And then in October, we found another lesion on Nimmy’s skull. Nimmy had neuro-surgery in November 2021 to remove the tumour and to get samples to run further genetic tests.

 In June 2023, we discovered another skull lesion, which was surgically removed. In August of the same year, Nimmy was diagnosed with Diapebetes Isipidus, a sign that Nimmy’s pituitary function was being affected by LCH. She started a 2 year treatment plan, again as part of the LCH-IV trial in September. The first six months of intensive chemotherapy were pretty gruelling, with lots of time spent in hospital. Nimmy is now on maintenance until September 2025. 

Since her diagnosis, we’ve seen Nimmy’s strength and bravery in the face of everything she’s been through. She’s funny, clever and very strong-minded. She loves being with her family, including her older sisters, Aliya and Marissa, and her younger brother, Spencer, and she has a big group of friends. She loves watching movies and terrifying movies and loves animals, particularly our cats, Yoshi and Mitski.

Working with the doctors on Nimmy’s treatment clarified how much research needs to be done to understand more about LCH and how to treat it. It’s just so important - all of Nimmy’s treatment has been part of a trial, but there isn’t enough research into what stops LCH from repeatedly reactivating. We want to help change the future for other children with LCH. We are delighted that money we have already raised is being used to help fund a new research project looking into why some children with LCH go on to have long-term issues, something we hope Nimmy won’t be affected by.

We have more fundraising plans for 2024 and hope to raise even more to help gain a better understanding of LCH.

Fundraising pages

Text CCLGNIMMY to 70085 to donate £5.

CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.

You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for #TeamNimmy so that your donation is allocated to the correct fund. 

90% of funds raised will go towards research into Langerhans cell histiocytosis (LCH) and 10% of funds raised will support CCLG's work for all childhood cancers.