A heartbroken mum has opened up about losing her six-year-old daughter who suffered from Batten disease.
From her big smile to infectious giggle, parents Carly and Paul Hadman describe their first few years with Effie as 'magical'.
But their world was turned upside down when Effie started to suffer from small seizures and blackouts, aged two.
On the day before her third birthday, Effie woke up and collapsed to the floor.
Her parents said she then lost her ability to walk overnight.
Carly, from Whitley Bay, North Tyneside, said: “Her birthday present, her little yellow bike with cupcakes on, remained wrapped up in the shed. Effie never unwrapped it.
“Then Effie started to develop dementia. We’d go out for the day and she would completely forget where we’d been by the time we got home.
“She could no longer count, remember shapes, colours or her friend’s names. It was devastating.”
In November 2016, the family were told Effie would be tested for Batten disease - a life-limiting disease that only five children a year are diagnosed with in the UK.
When Effie’s test came back positive, Carly and Paul’s hearts broke as they knew that they would be watching their precious little girl slowly slip away from them.
Carly added: “We had to acknowledge that Effie’s future wouldn’t just be different from her peers; she would not have one at all.
“We knew that this disease would rob her of every skill she’d developed, and those she’d been born with until she couldn’t even see or swallow. It would then take her life.”
After receiving the diagnosis, the couple said they felt on their own with only a fact sheet for support.
But when they came across Together for Short Lives, which helps families with children with life-limiting conditions to access the care and advice they need, they began to realise they were not alone.
Little Effie needed round the clock care and rarely slept through the night.
With the stress and anxiety of not knowing how long left they had with their daughter, it made Carly and Paul’s life extremely difficult.
As the disease progressed, Effie needed 52 doses of medicine per day, two nebulisers, four tube feeds, and three sessions of chest physio.
Over the coming months, Effie became paralysed, tube-fed, was on oxygen and lost her sight.
On February 2017, Effie lost her fight with the disease, leaving behind her heartbroken parents and her little brother George.
Carly added: “There were to be no more playdates at the park.
"It was heartbreaking for us to seeing Effie’s healthy friends, doing the things our little girl should be doing.
“When my Effie passed away it was unavoidable, we knew it was coming.
"We just had to make sure we planned in advance to make it the best end for Effie. It’s what she deserved.
“I resuscitated her for 12 minutes before the ambulance got there, it was the longest 12 minutes of my life.
“Thanks to Together for Short Lives, we also found out that we were not alone. Every day, families like ours have to face the heartbreaking news that their child will die young.
“They were there for us, when we felt lost. They were there to listen, to help find the care that was right for Effie and our family and to connect us with other families.
“We thought we were on our own, but that’s when Together for Short Lives said: You are not alone.”
Together for Short Lives supports and connects thousands of families every year going through similar traumatic losses as Carly and Paul’s.
Lizzie Chambers, director of programmes, said: “We hope Carly’s story will help us to reach more families just like Carly’s, who are looking for support but don’t know where to turn.
“Calls to our helpline have doubled over the last year as the pandemic has compounded an already very difficult life of caring for a child with complex care needs.
“Life has never been harder for these families and we want to reach as many of them as possible so that they too know they are not alone.“