Teraysa has a condition shared by just 40 children in the UK
A mum has been told she faces having just seven years left with her daughter because of a fatal disease which affects 40 children in the UK. Stacey Sprason, 41, was left fearing the worst after her tot, Teraysa, had to fight for her life after a sudden seizure.
She was rushed to the hospital and eventually diagnosed with Batten disease. The condition, for which there is currently no cure, affects only 40 children in the UK, according to the Batten Disease Family Association. And it’s estimated that little Teraysa won’t live past the age of 10.
“It’s gut-wrenching and heartbreaking,” said Stacey, from Christchurch, Dorset. “We are utterly devastated and completely broken as a family. Out of all my siblings, I am the most maternal, and I always knew from a young teen I wanted to be a mum. It’s not fair that I have to lose one [of my kids].
“I don’t wish this on anyone – it feels like I’ve done something so bad that my child has to be taken away from me. I know people say they only give the strongest of people the hardest challenges, but I don’t want a challenge; I want all my children. I always knew there was something different about her when she was born.
“I honestly thought she was going to be reading by one year old. Never did I think it was something like this.”
Stacey, who has seven other children with husband Michael, 42, was left shocked after the initial seizure. She said: “I remember being instructed to record every seizure and keep track of how long they were. When they found that both sides of her brain were affected, she began having tonic-clonic seizures, which got so bad that she stopped breathing multiple times.
“One of the scariest times was during the summer. It was a normal day, until one of our kids ran into the house screaming. I went outside to check, and Teraysa was in the paddling pool, face down in the water, after having a seizure.
“She was pulled out and put into the recovery position – but was completely blue in the face. I feared the worst. Luckily, she began breathing again as the ambulance arrived, but it was terrifying. I thought it was just a case of epilepsy, as that runs in the family.
“But after learning it was [a fault in] mine and my partner’s genetics, it was a shock. I don’t think it’s properly sunk in for both of us yet. Teraysa has to sleep with me and her dad because of the constant worry that she will have a seizure in the night. [I’ve also installed] a motion sensor camera above her bed.”
Teraysa has just undergone brain surgery to fit a reservoir to help prevent fluid buildup in the brain. She is due for another four-hour invasive treatment, which will happen every two weeks, to pump healthy enzymes that her body doesn’t produce naturally into the fluid around her brain.
It’s hoped this will slow down the disease, but it comes at £500,000 cost per year. Without treatment, though, it’s likely she wouldn’t live past four years old, and so the family have deemed the pricey treatment “crucial”.
Luckily, this is being funded for the family. Sadly, there’s a high risk the three-year-old will lose sight in both eyes, along with the ability to walk, talk, eat and swallow. Stacey fears that her little girl won’t respond to treatment and their time together will be cut even shorter.
She said: “It’s hard seeing her deteriorating bit by bit. And the toll on us financially getting to London is difficult, as it’s not cheap. I’m trying to keep things as normal as possible for as long as I can. Our dream is to take her to Disneyland before we have to say goodbye.”
Now, the family are hoping to raise funds, with over £4,663 donated so far out of their £11,000 target. It’s hoped they will be able to take her on the once-in-a-lifetime trip, along with aiding the costs of transportation. Stacey added, “We are scared that she will deteriorate quickly, and we won’t have long with her at all.
“All we can do is cling to the hope that there is someone, somewhere in the world, who can come up with a cure in her lifetime. I can’t reassure other parents going through a similar situation, as everybody’s journey is different. It’s a horrible thing to have to go through, but just hold onto hope, because that’s all we have.”