The Story of Harlan

You can’t tell by looking at him, but patient, gentle little Harlan has been bravely battling multiple villains every day since he was a tiny baby.

The first sign that something was really wrong was at eight weeks old, when at home with his mum Becky, he just stopped breathing – going stiff, blue and foaming at the mouth. It was put down to a breath-holding episode, until four weeks later when he had a very scary convulsive seizure. Becky had to revive him using mouth-to-mouth resuscitation.

In hospital he continued to have seizures, and within 48 hours he had lost his ability to coordinate feeding. His swallowing was delayed causing aspirations into his lungs; he developed central apnea that caused him to stop breathing in his sleep; and he had problems regulating his temperatures, becoming hypothermic with no warning.

Harlan spent two months in hospital. He was discharged without any any real answers, but after two days at home he became seriously ill. They thought it was pneumonia related to his aspirations, but tests showed his pancreas had stopped working. He spent three days in ICU and was diagnosed with Type 1 diabetes.

Since then, Harlan has suffered from developmental delays, speech delays, and has extra fluid on the brain; but there is no clear diagnosis that links all of his illness to one condition.

He and his family are currently undergoing genetic testing to try and figure what’s causing it all, but at this point all that doctors have been able to tell them is that it’s neurological.

Harlan still suffers from regular seizures, often reversing the developmental milestones he has achieved. There may be brain damage from his early episodes but they wont know until he is older.

He sleeps hooked up to oxygen and an oxygen saturation monitor, as silent seizures can cause him to stop breathing. Becky sleeps with him every night to make sure he is safe.

“Every night I go to bed with the possibility he wont wake up in the morning.”

Harlan is in and out of hospital, under the care of several different departments. He wears an insulin pump 24/7 and has his skin pricked to test blood sugar multiple times a day; he has to have his temperature checked every three to four hours.

Becky talks about how difficult it has been to adjust to their new life.

“We have to be constantly switched on; there’s no respite. We are constantly checking his pump, checking for signs of seizure. I can’t just put him down in front of the TV to have a shower. When we go to the shops I have to make sure I park somewhere with ambulance access, just in case…

There are so many things that could go wrong. Every morning I wake up and hope today is not the day I lose him.”

But Harlan, now two, is such a content little boy.

“Despite all of the poking, prodding, needles, endless tests and medications, he takes it all like a champ, trusting that it’s what’s best.

“His superpower is faith. He puts faith in his doctors, and faith in me… he gives me so much hope that he can and will live his life to fullest.

“At two years old he is braver than I have ever been, he has more patience than I will ever have. He has more determination than I’ve ever seen in a person.

He is so resilient, and happy to be here. He enjoys life however it comes.

I am so proud to be his mum!”

And no wonder. On top of all of his superpowers, Harlan has the most infectious of smiles, and is very creative. He has excellent fine motor skills, and loves colouring in. You might have guessed that he also loves balloons!

The biggest battle that Harlan and his family face is the unknown. They don’t know what will happen to him on a daily basis, and no one knows how his condition will develop over time.

Having no name or reason for his unique combination of issues can be isolating. There are no other families going through the same thing that they can talk to and bounce ideas off, and no organisations to provide social or financial support.

It can be difficult for others, including medical professionals, to understand the magnitude of what they go through every day. Harlan looks so well, and each of his conditions on their own are not perceived to be a “big deal,” despite the constant high level care he needs.

Becky explains that the balancing act to keep Harlan alive and healthy is not well understood, and they are constantly having to advocate for him in hospital and the community.

“Sometimes it feels like they have given up on us; that the world is just going on around us.”

She is keen to get the message out that not all childrens’ illness is visible, or explainable. Not every illness can be managed with medication. This doesn’t make it any less serious, or difficult. Each child is unique and should be celebrated for their bravery and resilience.

“Be kind, and offer support to families of those with complex, less common or undiagnosed illness.”

Harlan’s family is now looking to the next six months, to see whether genetic testing will provide answers for their little boy. But in the absence of a medical explanation, they have coined their own phrase to describe what he is going though:

“It’s a Harlan thing.”

It captures this little hero’s own, unique battle perfectly.

To learn more about Harlan and follow his progress, you can check out his Facebook page.

You can purchase prints of Harlan’s artwork here.

| Hannah Moss | Moss Copy Creative Communications
| | @hannamossity |

Artwork by
| Janet Pan | Little Sketchy
| | @littlesketchyaus |

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