If Lisa’s son Zander is too hot or cold, it could be fatal.
Here, Lisa Ford, 35, tells the story in her own words.
Unwrapping my four-month-old son Zander from his little dressing gown, he let out an ear-splitting screech.
‘I know it’s chilly darling,’
I soothed, lowering him into the warm bath.
But tears filled his eyes and his face turned beetroot red as he screamed.
And after a few minutes, I noticed something sinister.
The tips of his tiny fingers and toes had turned blue and his lips were going a deep indigo colour. I tried to make the bathwater hotter, but he was still shivering. And this was not a one-off.
‘I think there’s something wrong with Zander,’ I told my husband, Bretton, 45. ‘He’s always freezing.’
It was winter, but we kept the heating on and I always dressed him warmly.
As soon as I took off his booties and stripped him down though, he’d shriek like he was in pain.
I couldn’t understand what was wrong – and neither could our doctor.
‘He just has an abnormal body temperature,’ he reasoned.
A few months later, Zander was old enough to take swimming lessons.
One day, after I took him out of the pool, his temperature dropped dramatically.
I watched in horror as the dreaded blue spread over his body and his eyes rolled to the back of his head. Wrapping him in a towel, I desperately tried to warm him up.
Thankfully, when we got out of the cold changing room, he perked up again.
But as summer rolled around, my poor boy just got sicker. Now, the heat was his kryptonite, causing him to suffer febrile seizures and scream in pain on a 40°C day.
‘He can’t seem to stand the hot or the cold,’ I worried to Bretton.
Going to doctor after doctor, no-one could pinpoint what was wrong. It just didn’t make sense.
By the time Zander had turned two, we were at our wits’ end. We visited paediatricians, neurologists and doctors, with some accusing me of making up Zander’s illness.
One even blamed me, saying I suffered from ‘Munchausen by proxy’, where parents make up fake diseases for their children.
I was mortified, but I persisted. I knew I wasn’t making up anything.
Finally, after visiting our third neurologist, we were referred to a rheumatologist ‘Your son has Ehlers-Danlos syndrome (EDS),’ he explained.
A rare genetic condition, it meant Zander had a connective tissue disorder which made him hyper-flexible with ‘velvety’ skin.
While this wasn’t causing any problems for him yet, a side effect of EDS is a condition called dysautonomia, which Zander was finally diagnosed with at age six.
My lovely son’s body had no concept of temperature control – meaning overheating or being too cold could prove fatal.
A sunny day or a freezing wind could kill him if he stayed in it for too long.
While I was beyond scared for Zander, it was a relief to have some answers.
Doing some research, I was horrified to discover there was no cure or even treatment for EDS or dysautonomia.
When it was time for Zander to start school, I sat down with the principal.
‘Zander can’t be in the sun if it’s too hot. Where is he going to play?’ I asked.
‘He’ll have to sit in the shade,’ he replied.
But I couldn’t stand the idea of my boy being isolated and lonely. He needed to run around!
Starting a fundraiser, I got help from our local Woolworths and collected enough money to build an incredible playground in a shaded area where Zander could safely play.
‘I’m so excited,’ he grinned.
Now he wears a special school uniform to ensure he doesn’t overheat, and teachers take his temperature on the hour.
If he gets too hot we have to regulate his burning temperature with cool towels and the air-con.
While we’ve learned to control Zander’s condition, our hot summers and cool winters can be hell for him.
Thankfully, he knows his limits. When he starts to feel the cold, Zander asks for his dressing gown. And he’ll ask me for a cool towel if his little body heats up.
There is nowhere near enough awareness or research for EDS and dysautonomia in Australia.
Sadly, I felt like I was alone while we struggled to find a diagnosis and even now it’s a shame there’s no support for Zander’s rare condition.
Our lives are ruled by the seasons, but at least we can try and stay one step ahead.
It’s just scary going into winter knowing that wrapping up isn’t just to keep warm. For Zander, it’s actually life-saving.
Read more in this week’s issue of that’s life, on sale now.
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