By Mal Butler
Schools and businesses put on the glitz to support the fund-raising efforts for six-year-old Tula Hunt on Friday.
As previously reported, Tula, a pupil at Nettlestone Primary School, was diagnosed with a rare and aggressive form of childhood leukaemia in January, and was immediately evacuated to the mainland with her family. She is now receiving specialist treatment for Acute Myeloid Leukaemia (AML) at Southampton Children’s Hospital, one of the leading paediatric centres in the UK.
The aim of Tula’s Day was to wear bright, glitzy colours at school, or in the workplace, to reach the initial £100,000 goal of a GoFundMe page: ‘Tula Hunt’s Fight Against AML Leukemia’, which was set up by friends of the family.
Just last week, parents, Pete and Jo, were dealt a devastating blow, saying on the page: “We were told that the leukaemia was back in the blood which means it slipped out of the bone marrow where it is supposed to have been exterminated.
“In short, the standard chemotherapy doesn’t work on Tula. To say this was heartbreaking would be the understatement of the century – it was utterly devastating.
“We have met with the palliative team and discussed a variety of questions surrounding death: the hows, the wheres and the whats. No parent should have to go through that meeting, ever. It’s stomach curling.
“However, after discussion with Great Ormand Street Hospital and a leading hospital in Texas, there has been a new plan, which is not just to give Tula longevity, but to get her to the point of transplant – her only hope.
“They don’t normally run the protocol in the UK for children, and we do not wish to increase any expectations; however our consultant has asked us to get in the mindset of it being a possibility so that we can get to transplant and park the palliative thoughts.
“What this means is Jo and I are now in ‘we are going to fight this’ mindset. We are in the last chance saloon, with trial drugs that need to get Tula to a bone marrow transplant with the NHS in the UK.”
To support her day, Tula’s Year 1 classmates, along with the rest of the school and their teachers, all dressed up in Tula’s favourite things including rainbows and unicorns.
Pete and Jo added: “We are so grateful for the Island’s love and support throughout this horrendous time – ‘Tula Day’ has gone global, thanks to the enthusiasm of the local community.
“Each and every donation gives us the opportunity to explore further healing opportunities for Tula if the current trial drugs fail.
“We pray that’s not the case but we can’t leave it any longer to get ourselves prepared. Thank you Isle of Wight – we love you!”
Nettlestone headmistress, Anna Jacobs, said: “We are so proud that our little idea, from our little Island school on our little Island has managed to inspire so many people, not just on the Island or the mainland but around the world!
“We send our love and strength to Tula – #Tulastrong #gogreenarmy.”
Isle of Wight Observer