Mum’s white lie: I won’t tell my three kids they’re dying

Mum’s white lie: I won’t tell my three kids they’re dying

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Dee's family
Dee's family
A deadly curse had hit my family but I refused to let it break us apart…
By Dee Evans, 41, from Hereford

The front door slammed.

“I’m back for tea, Mum!” my eldest daughter, Jasmine, 18, hollered through to the kitchen.

“Get the gang in from the garden and I’ll serve up,” I replied.

As the rest of the family spilled into the dining room, I could barely make myself heard to remind everyone to wash their hands before we tucked in.

Family life was always chaotic with five kids at home – Jasmine, plus identical twins Toby and Corey, 11, Amber, 10, and Izzy, six. When my oldest, Joe, 22, popped round we had a full house.  

 

That was just the way I liked it though. To be honest, if I’d been able to persuade my partner Jody, 35, I would have wanted an even bigger family.

Then, one afternoon the twins’ teacher caught me outside the school gates.

“Do you think the boys need glasses?” she asked.

Dee and her family
Dee and her family

“I haven’t noticed a problem, have you?” I said, worried.

“We’ve noticed them squinting a lot at the board,” the teacher told me.

So, I took them to the opticians, and they walked out with matching frames. But, the glasses didn’t seem to do the trick.

Soon we were seeing a specialist at the Victoria Eye Unit in Hereford County Hospital. After extensive tests, the doctor broke some devastating news.

“Your boys have got extensive scarring at the back of their eyes. It’s a degenerative eye condition.” he said.

 

“How do you fix this?” I faltered.

“I’m afraid they’re going blind,” he replied, gently.

My blood ran cold. My two gorgeous boys would never have the independence of learning to drive, or the thrill of seeing the world.

I learned that in time their vision would decrease until they’d be registered blind.

The only thing that gave me comfort was that we’d get through this as a family. The twins would never have to tackle a single obstacle alone.

Back at home, Jody and I broke the news to the boys in the best way we knew how.

“You’ve got magic eyes, so you’re going to need some more checks at the hospital,” Jody told them.

“It’s going to be difficult for you to see, but don’t worry because we’ll find other ways to do things instead,” I added.

 

My heart broke as the twins took the news in their stride, and dashed off again to play.

Jody with twins before diagnosis
Jody with twins before diagnosis

For the next few months we struggled on as a family, making sure the boys were getting extra help in school.

Then, a year ago I noticed that their vision suddenly seem to take a dip. Corey had stumbled into the doorframe and tripped.

“Watch your step son,” I said. I was worried though.

Then, last October, we shipped the kids off to Jody’s family in the Forest of Dean so we could have a bit of time to ourselves.

At first the peace and quiet was strange. But, just as we were beginning to relax the phone rang.

It was Jody’s dad.

“Corey’s had a seizure,” he said. “Can you get to Gloucestershire Royal Hospital?”

 

“We’ll be there,” I said, dashing to grab my handbag.

Jody looked panicked. But when I explained, he grabbed the keys and we ran out to the car. Our son had never had a seizure before, this was totally out of the blue.

By the time we arrived in A&E, Corey was just starting to come round. He gave me a groggy smile.

Jody’s father was there too, having arrived in the ambulance with Corey. The doctor came to talk to us.

“Don’t worry, with children these things can just happen,” he said. For the next few months, it seemed like it was a one-off.

Then, in December, the school rang.

“Toby has had a seizure at school,” I was told.

 

I immediately thought back to Corey, lying there limply in that hospital bed.

“Are you sure it’s Toby?” I asked. As identical twins, it was easy to get the two mixed up.

“It’s definitely Toby. Can you come down?”

He was kept in hospital overnight, after having a second seizure on the ward.

Over the next few months, more seizures followed. We got an appointment with an epilepsy clinic to get to the bottom of what was happening with my poor boys.

First their eyes, now this…

It didn’t even occur to me that their health problems could be connected, until I got a letter from the hospital.

They wanted to do some blood tests for further investigation, and mentioned a possible diagnosis of Batten disease.

 

I’d never even heard of it. So, naturally I got online to find out more. As I clicked through the search results on Google, an icy dread gripped me.

First eye problems and fits, then speech loss before patients are bedridden and eventually die.

Toby and Corey
Toby and Corey

I burst into tears, right there and then.

Surely that couldn’t be happening to our sons? I told myself.

I knew the symptoms seemed to fit though. So, I went out into the garden to find Jody.

“You need to see this,” I said, handing my phone to him.

He started scrolling down, before thrusting it back towards me.

“We don’t know anything yet, Dee,” he croaked, choked up. “Let’s hope it’s not.”

Soon the twins had blood tests, but in the meantime they got some results back from MRI scans. We were told these results were clear, and I took this as a huge positive.

 

Maybe everything will be fine…

Then, a few weeks later, in March, we travelled up to a genetic clinic in Birmingham to get the blood tests results.

“It’s juvenile Batten disease CLN3,” the specialist confirmed.

My mind reeled as I tried to take in all the information we were given.

“Unfortunately there is no cure, but we can help to treat the symptoms as they arise,” he said.

All I could think about was that my sons were going to die. The average life-span is late teens to early twenties. How was that fair?

Eventually, I stood up and walked out, tears flooding my eyes. I didn’t want the boys to see me cry. Then I forced myself to wipe my eyes and head back into the appointment.

 

I could see that Jody was struggling to hold it together too. The drive home was a blur. We put some music on for the twins, and got lost in our own thoughts.

We couldn’t say what we wanted to in front of them. We headed straight for Jody’s mum’s house, where we gathered the adults in the family together and broke the news.

There were tears and hugs but one thing was for sure… with family around us we’d pull through.

Our emotional ordeal was only just beginning though. As Batten disease is a genetic condition, Izzy and Amber would have to be tested too.

I had Jasmine and Joe with a previous partner, so it was some relief that they’d escaped the curse.

But Jody and I both carry the rare gene, and we’d unwittingly started a family.

I clung on to the hope that the girls would be okay. Statistically, it wasn’t a dead cert that they’d have Batten too.

 

 

I told the hospital to phone us with the results as soon as they had them.

Then, last month Jody picked up the phone and one look at him told me it was the news we’d been dreading.

“Amber’s clear, but Izzy’s got Batten,” he told me, white as a sheet.

Izzy at sports day
Izzy at sports day

My perfectly healthy little girl had a deadly disease.

“How is this fair?” I cried on Jody’s shoulder, as he pulled me into a tight hug.

“It’s not,” he said.

Our hopes and dreams for our children were shattered.

Now, when Izzy dresses up as a princess, it’s a stark reminder that we’ll never get to celebrate her wedding day.

 

Jody mourns that he’ll never take the boys for their first pint, or give them a hand with their first car.

Just a few weeks ago Toby told me he wants to be a policeman when he grows up.

“That’s a good idea son, maybe,” I replied, knowing he’ll be in a wheelchair long before he can start a career.

This is why Jody and I have made the incredibly difficult decision not to tell the kids about their disease.

We want them to live for today, not worry that they’re dying.

We’ve confided in Amber though. She’s a smart kid, and we worried that it would only be a matter of time before she worked things out herself.

Jody sat down with her at the dining room table, helping her with some colouring books.

“You know what’s going on with the boys? We know why it’s happening now,” he told her.

She burst into tears.

“It’s all going to be okay, but they will be poorly. One day they might need wheelchairs,” he explained.

Then a little glint spread through her eyes.

“Can I push them in the chairs?” she asked.

My heart leapt. That’s her all over – always ready to be there for her siblings. Now she’s helping us to make special family memories.

The twins have been football mascots at Old Trafford in front of 50,000 fans, and we had a fantastic VIP tour at the Sea Life Centre in Birmingham.

We’ve also had casts taken of the whole family holding hands.

 

It’s not just the big things though. We want every single day to be filled with laughter and fun around the dinner table and in the garden.

Family
Family

Family and friends have been helping us to fundraise so we’ve got the money to make the most of the precious little time we’ve got with Corey, Toby and Izzy.

We’re also raising money for the Batten Disease Family Association, in the hope that one day extra funding will help to find a cure.

The condition is incredibly rare, affecting between just 30 and 40 children in the UK.

I wouldn’t wish this on my worst enemy, but I can’t help but wonder… why did it have to be three of mine?

Dee was keen to raise awareness of Batten Disease in the hope that one day, a cure may be found. Her family was also raising money for the Batten Disease Family Association, so we helped them sell their story to That’s Life! magazine. If you want to promote an issue or cause close to your heart, fill in the form on the right and we’ll talk you through how the process works.