The parents of a two-year-old suffering from an aggressive form of cancer are fundraising in a bid to save her life.
Esme Handley, is the daughter of Will, 43, and Rebecca, 38, from West Norwood, South London.
Nicknamed “Esme Lion Heart” on account of her love of lions and “lion-like bravery” – according to dad Will – the brave child has been battling acute myeloid leukaemia for almost a year.
She requires an urgent stem cell transplant in order to make it to her third birthday.
Esme, the couple’s only child, was born after Rebecca suffered four miscarriages and three operations (one which almost killed her) in a bid to bring a child into the world.
But disaster struck anew in June 2018, when Esme, then just 22 months, was diagnosed with cancer during a family holiday.
“On the 2nd June 2018, in what seems like a different life my wife Rebecca, Esme my 22-month-old daughter and I flew out to a resort in Thessaloniki, Greece for a much-needed, long-awaited weeks holiday,” says Esme’s dad, Will.
“The day before we flew Esme had taken a tumble and we were becoming alarmed at the disproportionate size of the bruising that followed.
“In hindsight this followed a pattern of ‘easy bruising’ and on our first night, instead of relaxing over a bottle of wine, we began a Google search that ended in a cold sweat for the both of us.
“On our second day in Greece we booked a doctor-on-demand Skype call and found ourselves falling through a series of trap doors from the resort doctor’s to blood tests at a regional hospital and the irreversible moment in time we were taken into the office of a Paediatric Consultant and heard the word ‘leukaemia’.”
“We spent our second night in tears and in a Greek hospital with Esme on a drip next to us. On what should have been our third day on holiday we took emergency flights back to London.
“In my hand luggage I carried a hypodermic needle, an adrenaline shot and an oxygen mask kit given to me in case Esme showed any further reaction to the platelets transfusion she’d been given that morning to be ‘fit to fly’.
Initially, Esme was diagnosed with acute lymphoblastic leukaemia – which has an 80% cure rate.
However, back in London, doctors discovered it was actually a more aggressive condition called acute myeloid leukaemia – which has a 60% cure rate depending on the type.
To make matters worse, it was found her cancer has a rare genetic marker (NUP98-KDM5), which means a high risk of non-response to treatment and relapse.
Over the next six months, Esme underwent an intense in-patient programme which involves three rounds of chemotherapy and a stem cell transplant, during which time she suffered sepsis and anaphylactic shock.
Initially, consultants were happy with Esme’s progress. However, at the end of her six month ordeal, a test revealed the NUP98-KDM5A genetic marker was back, meaning a future relapse was inevitable.
Now, after the harrowing journey, the Handleys only hope is to secure a second stem cell transplant for Esme.
Unfortunately, the Royal Marsden Hospital – where Esme is being treated – will most likely be blocked from funding the procedure until 12 months after the first stem cell transplant procedure, due to NHS England Policy.
This means the procedure will need to be done privately.
“In the US and other private centres, second transplants are offered within one year but unfortunately that is not the case here in the UK,” says Will.
“For her second transplant the plan would be to use an adult (rather than original umbilical cord) donor and manipulate more 'graft versus host effect' to eradicate the leukaemia - so there is every hope for a permanent cure.”
Will says the pair are having “sleepless nights” over their need to save their daughter’s life.
“The reality is right now without your help, we have no guarantees she will see her third birthday.
“This is why we have now taken the decision to fundraise to give our little lion cub the best shot at a lasting cure.
“Esme has inspired us every day of her life with her lion-like bravery and her zest for life. We invite you to join Esme’s pride of supporters and move mountains to give her a second chance.”
They have so far raised £83,000 from over 1,500 donations, but need to raise an estimated £500,000 to save their daughter before time runs out.
“Whilst the £500k target is our best understanding, we are still unsure of the exact figure as we're still in negotiation with a number of different hospitals (within the UK and abroad),” adds Will.
“However, we need to start now rather than wait until we have all the details - as by then it may be too late.”
To support the campaign, donors can visit the family’s Go Fund Me page.