Why I No Longer Pray for a Cure for My Son’s Terminal Condition


I am a parent of a child with a terminal condition called Hunter syndromeI no longer pray for a cure.

Terminal or life-limiting conditions give you a perspective, one that’s different to most and one you can’t really explain.

When do you stop looking for a cure or a breakthrough in medical research?

I spent years searching for the latest medical advances, and in 2011 we boarded a plane to Birmingham to take part in a new clinical trial for patients with Hunter syndrome.

We spent five days in Birmingham. Our son, Ethan, went through assessment after assessment. On paper, he was a suitable candidate.

We went back to our hotel room to discuss how we would afford the monthly trips to and from Birmingham, and how we could work our schedules so that our other son, J, wouldn’t be too upset with us. We even went as far as to decide which one of us took Ethan over for his first ever treatment.

The treatment scared us, but we danced around that and didn’t discuss it. Instead, we talked about hope — medical advances and all the other wonderful boys in America who were already on the trial. 

The trial: The drug Ethan is already receiving would be put into his brain, as currently it does not pass the blood-brain barrier naturally. They do this by first placing a port in Ethan. That alone has huge risks, as Ethan has a narrow airway, making intubating him a skill in itself.

Once the port is placed, the drug is injected into it, and a tube inside Ethan (which is attached to the port) then brings the drug into the spinal fluid, where it travels up the spine and into the brain. The hope is we would see stability in Ethan’s cognitive levels.

Again, this isn’t a cure, but it’s a way to keep Ethan from losing any further cognitive skills, plus his regular ERT (enzyme replacement therapy — so Ethan’s syndrome wouldn’t progress as fast.

We could have him in good health and cognitively well for a lot longer.

Imagine what it could do for a child who was only a few months old living with Hunter’s?

We sat with the doctor early the next morning. We were getting ready to do Ethan’s final test and the one test we were frightened of: a lumbar puncture.

The doctor straightened his papers on his desk, asked a nurse to take Ethan for a walk and invited two other nurses to sit with us.

He coughed.

I held my husband D’s hand as we watched him.

“Sit down please, guys.” He nodded at the chairs across from his desk.

I had flashbacks of Ethan’s diagnosis day; I knew this wasn’t going to be good.

“Do you want a cup of tea?” one of the nurses asked.

I shook my head as I stared at the doctor who was now scanning the top sheet of paper on his desk.

“Ethan has passed all our tests, as you both know.”

He coughed again. We nodded like bobble heads.

“I see here,” he glanced at the paper on his desk, “that Ethan had reactions to his ERT when he originally began treatment back in 2008.”

“Yeah,” I almost whispered.

“And Geraldine, I also see he has had a reaction as recently as eight months ago.” He swallowed, hard.

I felt my heart drop.

I was nervous about the trial and the risks and the travel and all the other things that came with it… but I never thought about not being part of it. It was a chance at life, a chance of Ethan living into adulthood with disabilities — it was going to give Ethan a fighting chance against Hunter syndrome, a condition that medical advances might still find a cure for.

D’s voice boomed me back into the room.

“So that’s it, is it?”

His voice bounced off every wall of the office. While one nurse rubbed my back, the other tried to explain to D exactly what the doctor was trying to say.

“We can’t be part of it, can we?” I asked. I felt my tears fall.

“Reactions are too risky. Eight months reaction-free is just not enough. We can’t put him through a lumbar puncture knowing he has had reactions; there would be no point.”

“Well, doc, I can’t lie. We had it all planned, we were very hopeful, you guys let us be! We knew there were risks, Jesus, but… but if…” I stopped D mid-sentence.

“One question, doctor… if he were your son?” I squeezed D’s hand. I looked at the wedding finger on the doctor’s hand. I saw his family picture on his desk. I needed to know what he would do as a father.

“Geraldine, D… if Ethan were my boy, I’d thank the doctor sitting in front of me, thank the staff at the hospital and I’d bring Ethan into the town center and enjoy your final day here in Birmingham.” He stood up, walked around to the front of his desk and placed his hands on his lap.

“If Ethan had a reaction, there is nothing any of us could do. It’s not like we can stop the infusion, like they have done with his regular ERT. This drug will go straight to his brain, a reaction will either take what he has left or kill him. So, my answer is: He is here, he is doing well; I’d bring him home.”

He stood up. Then knelt down by my legs.

“I am so very, very sorry.”

He was genuine; I could see he was sorry.

I wiped my eyes while D thanked them all, then we took Ethan and went straight to another Hunter family in Birmingham.

And that was when I stopped researching, stopped hoping for a cure (for Ethan, in his lifetime); I began to “live.”

I don’t keep up to date on the trial, which is still ongoing, but I do know it is successful and there is huge hope for an actual cure. I know money is a huge issue, as research and trials all cost money. That upsets me; money shouldn’t be an issue when there are lives on the line. 

Will Ethan be offered the drug if it becomes standard treatment for Hunter syndrome?

That I don’t know. I don’t think about that. I can’t live with ifs and buts — I need to be able to live.

But what I do know is that it will become standard treatment (eventually), meaning those younger boys or newborn boys will have a better chance at an average life than they do now.

Hope is alive and well. I do believe with every fiber of my being that they will find a cure; I just don’t believe our 13-year-old boy will be here to benefit from it. That is not fair or even remotely OK. It will come too late for many, but for many it will indeed save them from watching their child die, and that is the hope that brings me to where I am today.

Yes, I do have hope and faith in medical advances and the ongoing trials. I just don’t research them anymore. I am learning to live, laugh and love.

If you would like to know more about the current research into Hunter syndrome, please stop by and say hello to all of us at Project Alive.

A version of this post originally appeared on Firefly Friends.


Find this story helpful? Share it with someone you care about.


Related to Hunter Syndrome

two boys outdoors

The Honest Reality of Living With a Life-Limiting Condition

After my son, Ethan, was diagnosed, I spent a huge amount of time Googling Hunter syndrome. I felt I had no option but to Google as the doctor simply told us, “Go home, enjoy him, you won’t have him for a long time” — no one should ever have to hear that sentence about their child. [...]

When 'How Old Is He?' Isn't a Straightforward Question for a Parent

“How old is he?” you ask at the gym session we both go to. I always thought that was a straightforward question with an obvious answer. But then my youngest came along. Now whenever I get asked that question, I hesitate. What do I say? “He’s 3, but…” I’m not sure when I really started [...]

The Talk I Never Expected to Have With My Uber Driver About Rare Disease

I love Uber. I mean, who doesn’t? Three taps on your phone and you have a guy in a nice car picking you up, opening your door. It would sound like a great start to a first date if the next sentence wasn’t, “So you’re headed to the airport?” And if the guy didn’t look [...]

The One Painful Thing No One Told Us About Our Child’s Clinical Trial

“The risks include serious bodily injury, paralysis and even death.” I’ve read those words now enough times that it doesn’t even phase me. Jaded? Maybe. But when your child’s disease involves the certainty of death, the possibility of death doesn’t look so scary, especially when it’s coupled with the possibility of life offered by a [...]