‘Hughie Wilson Eyles was born on 14th October 2019. At four weeks old, Hughie developed a high fever and a rash. With his mum, Chloe, being a qualified nurse of nine years, she knew something wasn’t quite right with our little boy. After a phone call to 111, an ambulance was sent, and Hughie was taken to hospital. After five stressful nights in our local hospital, we were no closer to finding the cause of Hughie’s condition; it was clear Hughie needed to be at a specialist hospital. We were transferred to the amazing paediatric haematology and oncology ward down at Leeds General Infirmary. The team quickly got to work trying to stabilise Hughie and shortly after being admitted he was diagnosed with primary hemophagocytic lymphohistiocytosis (HLH).
HLH is a severe systemic inflammatory syndrome that can be fatal. Primary HLH can only be cured by replacing the immune system by receiving a hematopoietic (blood or bone marrow) stem cell transplant. The normal preparation for this would be chemotherapy and several other medications to get his body ready for the transplant. We, however, were offered a groundbreaking new trial drug called Emapalumab (immunotherapy) made specifically to target primary HLH developing in the body. We jumped at the chance to reduce the amount of nasty drugs Hughie would have to endure. Hughie was the first-ever patient at LGI to be part of the treatment program. The Emapalumab worked amazingly for Hughie to prepare him for his stem cell transplant.
He was treated as an outpatient for eight weeks, where we attended Leeds twice a week for treatment. We were always so happy to see Candlelighters in the hospital, making the tough days so much more endurable; from a cup of tea to a chat, all the team were amazing.
Thankfully, Hughie was very strong throughout his treatment and didn’t suffer from chemotherapy’s normal side effects. Unfortunately, two weeks after his stem cell transplant, Hughie developed a severe graft versus host reaction to his transplant. We were moved up to the pediatric intensive care unit’s incredible team for ten nights when sadly, on 1st March 2020, Hughie lost his fight with HLH.
After a very emotional twelve months without our little boy, we decided we wanted to do a challenge to mark the anniversary of losing him. We wanted to arrange a challenge fitting of our little boy, to show the courage and struggles he faced throughout his treatment, even with a smile on his face. We decided to arrange a walk from the place we had to say goodbye to our baby boy to the place we laid him to rest: a 37.5-mile hike along the Leeds-Liverpool canal, from the LGI’s Clarendon Wing to St Andrew’s Church, Gargrave.
The plan was for a large group of family and friends to undertake the journey to raise some money to support the amazing charity, Candlelighters, that helped us so much through our time in hospital and in the months that have followed since losing Hughie.
Candlelighters were fantastic in hospital, from cups of tea and fresh toast to a shoulder to cry on or a baby sitter so you could have a shower. Unfortunately, Hughie’s funeral was the first night of lockdown and this year has been different to say the least. Candlelighters have always supported us with phone calls, Facebook groups, Zoom calls, and now, bereavement groups. These groups really are healing; being able to meet other families going through similar pain really does help with the bereavement process.
We as a family, wanted to try to give something back to say thank you. COVID-19 had other ideas; however, I undertook the journey myself on Sunday 28th February 2021 (with some socially-distanced support along the way). Ten hours and 26 minutes after starting the challenge and 37.5 miles later, I achieved my goal.
Our amazing friends and family managed to raise a whopping £1200 through their generous donations. It wasn’t the big event we wanted it to be but nevertheless – it was a memorable one. We are very grateful for all our friends and family that have donated and supported us on this challenge, and we are hoping we can make it bigger and better every year to come.
‘Hughie’s Legacy Hoorah’ (HLH) may have been hampered by COVID-19 this year but fingers crossed it will stay clear for next year’s adventure.’ – Nathan, Hughie’s Dad.
We’d like to thank Nathan and all of Hughie’s family for their incredible support and Nathan for sharing his family’s story. All of the Candelighters team are truly inspired by this moving challenge.