Henry is a super kid!
A cheeky 7-year-old and a barrel of laughs.
He has a real kind soul, with a smile to match.
He loves aeroplanes, and when he grows up he wants to be a policeman.
He knows 3 jokes (all about poo), and his favourite song is ‘all about that bass’.
Henry’s favourite things about living on the road are;
...and he’s now part of a growing community that gets to call Australia his school yard!...
Since he was born he’s been a clinger. He lived the first year huddled mostly in a sling with me and was always an ‘unsettled’ baby. When he hit day care and school he was the child who clung to your legs screaming at drop off and had to be pried away. I’m sure a lot of you can relate.
Henry also wasn’t well. Since near birth he’s had reflux symptoms. The projectile kind. He also has eczema, asthma and allergic rhinitis. We bounced from a paediatrician to allergists to a paediatric gastroenterologist, and around again over the course of 5 years. We met with dieticians, nutritionists and tried most alternative and complimentary therapies. With no real answers, we couldn’t seem to find the cause of why he was so unwell, let alone a suitable treatment. Henry’s symptoms persisted through early childhood, and as he grew older and he begun to talk, we listened.
Henry told us he had pain every day.
He told us he feels sick in the tummy and wants to throw up all the time.
He told us his throat feels sore and food gets stuck.
He told us he has bad headaches.
We saw he was tired all the time, and had difficulty sleeping.
We saw his lunchbox come home still full of food.
We saw him experiencing pain.
We saw him every year blow his birthday candles out, then push the cake away.
We saw him not gain weight.
We saw him fail to thrive.
As parents, it was hard to find the energy, the
determination, and the money to keep knocking on medical doors advocating for
our child, especially when all the health professionals just kept scratching
their heads. At times, it felt like those closest to us also doubted us
too. Then last year, we yet again went to a specialist for a
‘second opinion’. We met with another paediatric gastroenterologist, who not
just heard Henry, but listened to him. Who listened to us as parents. Who didn’t dismiss us. He became part of Henry’s team. He wanted to find out why Henry was feeling the way he did,
and try to alleviate it, and he still hasn’t given up.
After 5 years, we got an answer.
Henry was diagnosed with Eosinophilic Oesophagitis (EoE).
Nancy - Henry's Mum
EoE is a chronic, allergic inflammatory disease of the oesophagus.
It’s a rare disease, and if you learn one new thing today, let this be it - these two amazing organisations ausEE Inc. and Rare Voices Australia are championing for little-known diseases that cause big impact.
Whilst travelling with a chronic disease can be tricky and presents some hurdles in managing healthcare. The advantages far outweigh any challenges.
But, EoE isn’t who Henry is.
It’s a part of him, but not the whole.
He is a bright, inquisitive, funny, mighty brave young boy.
....and sure knows how to live life to the fullest.