A Tauranga mother is struggling to come to terms with the heartache of finding out her daughter has a terminal illness.
“It is extremely stressful, not to mention sad. My baby girl is dying. One day soon I won’t be able to hold her and cuddle her, it is just so hard.”
After a year of continuous seizures – each increasing with intensity - noticing she was regressing in her abilities, mother of three Sheree Morrow says they took their four-year-old daughter Azalia to get genetic testing done.
“About six weeks ago, she began having drop seizures, where she would be happily playing and all of a sudden fly forward or most often backwards, landing on her head and whatever else was in the vicinity. They were terrifying as there was no warning signs and she ended up having to have her head glued after a fall at daycare.”
Sheree says this is when she knew things weren’t good.
“We were then called into see the paediatrician at Tauranga Hospital two weeks ago, as the results had come back.”
The diagnosis; Batten disease.
Batten disease is a rare group of nervous system disorders called neuronal ceroid lipofuscinosis (NCLs) that get worse over time.
There are different forms of the disease, but all are fatal.
As of yet, no specific treatment is known that can halt or reverse the symptoms of Batten Disease or other NCLs. However, seizures can sometimes be reduced or controlled with anticonvulsant drugs, and other medical problems can be treated appropriately as they arise.
Sheree says as a family they were devastated with the diagnosis.
“I knew the prognosis was not good as she had been losing weight, losing her balance and just generally regressing in her development.
“I had scrolled the internet for hours and hours trying to figure out what was going on. I never came across Batten disease.
“We were in shock, and the worst part was that we were told that our eight-year-old Isabelle and one-year-old Neko may have it too, as it’s genetic.”
That night following the diagnosis, Sheree says her and her partner couldn’t sleep. They were terrified that all three of their children could have this disease.
“We have been told that we need to see a geneticist to discuss the pros and cons of getting the other children tested.
“Isabelle should be okay as she usually would have shown signs by now, but may be a carrier of the gene. Neko has developed a lot more than Azalia ever had so they are hopeful he is okay. But we will not know until he’s about four-years-old.
“The future is so uncertain. There are families in the world that have more than one or all of their children affected. It’s terrifying.”
The past two weeks have been incredibly hard for Sheree and her family. She says Tauranga has no support services in place for news like this.
“We were essentially left to come home and carry on with life. I couldn’t function very well, the reality of what I suspected had set it, and I thought life was hard already. It’s about to get a lot worse.
“I have been trying to source extra support for at home as things can be very challenging with a one-year-old, eight-year-old and Azalia, and at the daycare centre that she attends.”
They have been given 7.5 hours a week for teacher aid time, but as Azalia needs one on one care most of the time, Sheree says she will be fighting for more hours.
“We 100 per cent believe she will die faster being isolated from the world, being kept at home, but unfortunately with a one-year-old in tow it feels impossible for me to take them out anywhere as Azalia doesn’t walk very much and has no safety awareness, and well neither does a one-year-old.
“I feel trapped. I can’t work and we barely leave the house.
“If I can’t work, I can’t pay for daycare for either of the kids so we will have to keep them both home.
“Some days I feel like giving up, luckily I have two other children worth fighting for.”
Last year in October, SunLive also did a story with Sheree after being caught up in a confused land package deal.
Sheree says it is apparently finally going ahead and they expect to have the title come through in around July this year.
Although this is good news for the family who originally bought the section back in 2016, Sheree says they are unsure if they can afford to go ahead with the house.
“Even though it will only be around $50 more a week to own our own house instead of renting, I am hoping to somehow get a carer for Azalia and continue to work two days a week to be able to afford our mortgage and a bit of money to be able to make the most of Azalia’s final years with us.”
A give-a-little page has been set up for Azalia with more than $7000 already been donated.
If you wish to donate, you can do so here