Isla is only two years old, this beautiful toddler and her family courageously face a very difficult journey, which will cut short her young life. Her mother, Nikita, shared her story with Kidspot reporter Carrol Baker.
When Harley and I started our beautiful family, I believed that all of our moon babies had their own paths and their own stories to tell. They would right their own wrongs, follow their own passion and dreams, do good, and make their journey to self-discovery.
I never imagined that one of my babies would get so sick, the doctors told me she would not survive.
Isla was reaching her developmental milestones, but around 18 months she regressed. She had difficulty walking and couldn’t remember the words she knew. Isla was on a waitlist to see a pediatrician in July, but I knew we couldn’t wait that long. I begged the doctors, but it fell on deaf ears. Finally, I found an amazing doctor who really listened to me.
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Little Isla. Origin: supplied.
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Isla had so many tests
Isla was admitted to the hospital, she had an MRI, quite agitated blood, they took about 10 tubes, she also had mini seizures. It had deteriorated in the space of about a month.
I also asked for help from a naturopath. Isla has allergies and dairy products are not suitable for her. There were nights when she cried out all night in pain, we couldn’t calm her down.
Isla’s dad, Harley and I are in the same boat. Isla’s determination, resilience and strength blew us away. Since we saw the naturopath, we put her on a vegan diet and her condition seemed to improve. She pushed herself to walk, every day she was better than the next. Her smile returned and she started to say the words she knew again. She looked more like herself and we started to feel optimistic.
But then we were told there was an abnormality in his blood results. We had started doing research online ourselves, on different medical conditions, anything that had a fatal outcome, we naturally took the plunge. You never think it will happen to you or your family. But we were wrong.
When we got to the meeting to discuss his blood results, there was the metabolic team, the neurology team, and a counselor looking at us with dark faces. I was sitting there with sweaty palms, hugging my beautiful little angel very tight.
Isla has a genetic defect, a neurological disease called Batten disease, she has CLN1, the rarer type. Her body can’t get rid of toxins, and the cells kill her nervous system and brain cells. Batten’s disease is also known as childhood or childhood dementia and can affect one in 100,000 children.
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You never think this will happen to your child. Origin: supplied.
A piece of us died in this room that day
When they told us, I felt my whole body go numb, as if someone had ripped out my heart or shot me at point blank range. My throat started to close and I could feel each breath getting shallower.
The pain in the room deepened as Harley said, “What is the Isla timeline like?” I searched each of their faces, desperately awaiting our options to save her. We heard, âThere is no cure, and there is nothing we can do. How? ‘Or’ What? Why? They said it was deadly, with a very short life expectancy. It is very likely that our daughter would not live beyond five years. The day we discovered it; it was as if a piece of us had died in that room.
There are days when we are sad and angry with the world, the mere thought that our days are numbered with our perfect baby girl is crippling. Harley thinks she is just too beautiful and too perfect for this world.
Isla gave us strength
Isla taught us the importance of time, of making every moment count. She has this incredible aura. I’ll feel sad or overwhelmed by it all, then I’ll look at her, and all of a sudden the pain goes away. She gave us strength.
There are clinical trials for other types of Batten disease, and we’re trying to be hopeful.
Our lives are busy, we make sure to still do a lot of things as a family, we don’t want to turn the lives of our other children upside down, they have seen mom and dad cry. Isla’s brother Harry is five years old, he knows Isla is not doing well and that she will not be getting better, Paddy is three years old and too young to understand.
Isla has good days and bad, if she has a cold it’s 100 times worse than any of the other kids. She can no longer walk, she remembers that she once could and tries to do it every day. Doctors believe her eyesight is going down, that she will eventually go legally blind, and end up with feeding tubes, they predicted it, but I’m not throwing in the towel. She is so determined and so are we.
Not many people have heard of Batten disease – we want to change that
More awareness is needed, not enough is known about Batten disease – I was in the hospital emergency department on Mother’s Day and no doctor or paramedic knew what I was saying. I had to explain everything in panic because my daughter was losing consciousness. Batten disease is real, and it is what some children and families struggle with every day.
A Go Fund Me family campaign has been set up to create special memories for Isla.