A heartbroken mother has opened up about the loss of her six-year-old daughter to Batten disease.
From her big smile to her contagious laugh, parents Carly and Paul Hadman describe their early years with Effie as “magical.”
But their world changed when Effie began to suffer from small seizures and fainting spells at the age of two.
The day before her third birthday, Effie woke up and collapsed on the floor.
Her parents said that she then lost her ability to walk at night.
Carly, of Whitley Bay, North Tyneside, said: âHer birthday present, her little yellow bicycle with cupcakes, remained wrapped in the shed. Effie never unboxed it.
âThen Effie started to develop dementia. We were going out for the day and she was completely forgetting where we were by the time we got home.
âShe no longer knew how to count, remember the shapes, the colors or the names of her friends. It was devastating. “
In November 2016, the family learned that Effie would be tested for Batten disease, a deadly 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 they were going to watch their precious baby girl slowly walk away from them.
Carly added, âWe had to recognize that Effie’s future would not only be different from that of her peers; she wouldn’t have any at all.
âWe knew this disease would rob her of all the skills she had developed and those she was born with until she couldn’t even see or swallow. It would take his life then.
After being diagnosed, the couple said they felt lonely with only an information sheet for support.
But when they stumbled upon Together for Short Lives, which helps families with children with life-limiting illnesses access the care and counseling they need, they began to realize they didn’t. were not alone.
Little Effie needed 24 hour care and rarely slept through the night.
Along with the stress and anxiety of not knowing how much time they had left with their daughter, it made Carly and Paul’s life extremely difficult.
As the disease progressed, Effie needed 52 doses of the drug per day, two nebulizers, four tube feeds and three sessions of respiratory physiotherapy.
Over the next several months, Effie became paralyzed, tube fed, on oxygen, and lost her sight.
In February 2017, Effie lost her battle with the disease, leaving behind her heartbroken parents and baby brother George.
Carly added, âThere was to be no more play date at the park.
âIt was heartbreaking for us to see Effie’s healthy friends doing the things our little girl should be doing.
âWhen my Effie passed away it was inevitable, we knew it was going to happen.
âWe just had to make sure we plan ahead to make this the best ending for Effie. That’s what she deserved.
âI resuscitated her for 12 minutes before the ambulance arrived, it was the longest 12 minutes of my life.
âThanks to Together for Short Lives, we also discovered that we are not alone. Every day, families like ours face the heartbreaking news that their child will die young.
âThey were there for us when we felt lost. They were there to listen, to help find the right care for Effie and our family, and to connect us with other families.
“We thought we were alone, but that’s when Together for Short Lives said: you are not alone.”
Together for Short Lives supports and connects thousands of families each year who go through traumatic losses similar to those of Carly and Paul.
Lizzie Chambers, Director of Programs, said: âWe hope Carly’s story helps us reach more families like Carly’s, who are looking for support but don’t know where to turn.
âCalls to our helpline have doubled in the past year as the pandemic has exacerbated an already very difficult life caring for a child with complex care needs.
âLife has never been so difficult for these families and we want to reach as many of them as possible so that they too know that they are not alone. “