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Brothers born with rare, life-threatening condition: 'There is no cure'

By Jo Abi|

First time parents Jill and Zach Maitland didn't know much about babies, but they knew enough to know that when their five-day-old son Billy began throwing up bile, something was seriously wrong.

?"We live near Kempsey on the NSW mid-north coast," Jill, 33, tells 9Honey. "We went to three different hospitals and nobody could give us an answer. Nobody could tell us what was wrong."

Their son's health problems continued. He was unable to have a bowel movement without the use of laxatives and suppositories prescribed by their paediatrician and continued that way for three years until his brother Danny was born.

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brothers born with Hirschsprung's disease rare life-threatening condition
Billy's health problems began when he was just five days old. (Supplied)

"When Danny was born he was diagnosed with Hirschsprung's disease. He was vomiting bile and couldn't poo at all. They detected it when he was one-day old. It's quite rare and we had never heard of it. When they said Danny had Hirschsprung's we thought, hang on, that sounds similar to what was happening to Billy. "

Doctors agreed the brothers were both suffering from the rare illness which affects the large intestine and causes problems passing stool.?

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brothers born with Hirschsprung's disease rare life-threatening condition
Doctors agreed the brothers were both suffering from a rare illness called Hirschsprung's disease. (Supplied)

"More of Danny's bowel was affected by the disease but Billy's had gone on for so long his bowel was more severely damaged," she explains. ?"Danny got away without having a stoma (an opening in the abdomen that allows for stool excretion into a bag).

"Forty centimetres of his bowel was removed when he was a newborn," the mother-of-two continues. "Billy had 20 centimetres of his bowel removed but after surgery his bowel perforated because it was so fragile and we nearly lost him.

brothers born with Hirschsprung's disease rare life-threatening condition
Zach and Billy visiting Danny during his hospital treatment for Hirschsprung's disease. (Supplied)

"That only happened in October, and he's had a stoma for a month. He's adjusted to it really well. He's back at preschool for three or four half days. I work part-time but I have to leave if there is a problem with his stoma. "

Jill explains the condition can be life-threatening depending on the severity.

"There is no cure, just surgeries to try and make life a little bit easier," she explains.

Genetic testing failed to detect the disease.

brothers born with Hirschsprung's disease rare life-threatening condition
'Billy's had gone on for so long his bowel was more severely damaged.' (Supplied)

Billy's stoma is temporary, but Jill is bracing herself for difficulty in him regaining control and how it will affect him emotionally." the mother-of-two explains. "Another problem is infected bowels and enterocolitis (inflammation of the intestines). That can turn bad really quickly. Danny, our littlest, has been rushed to hospital twice. It can turn to sepsis and that's how children die from Hirschsprung's.

"That's what Billy had after surgery when he had a perforated bowel. It was abdominal sepsis. Luckily we got him to the ED really quickly."

"He was completely normal, happy, playing all morning and then all of a sudden his face turned as white as a ghost," she recalls. "Then he complained of having tummy pains and he had a lot of blood coming out of his backside and a high fever. Luckily we were still in the Sydney area and were able to get him to Westmead (hospital) quickly."

brothers born with Hirschsprung's disease rare life-threatening condition
There is no cure for the disease and both boys face difficult treatments. (Supplied)

Billy is now five and Danny is two. Jill admits financial strain on the family having two children with additional needs has been hard.

"The first week we were in Sydney for Billy's surgery, Ronald McDonald House was full so we had to pay for our own accommodation. That was quite costly. We were about $1200 out of pocket. When we went back with sepsis, Ronald McDonald House had a spot. We were there for nearly all of the month of October."?

?Caring for children with rare disease can be a lonely and terrifying experience, something Gina Atlas knows all too well. Her eldest child George suffers from Hirschprung's disease, prompting her to form the organisation Help for Hirschprung's Disease which supports caring for children with the rare disease.

Gina and son George
Gina and son George who also suffers from the rare condition. (Instagram/help_for_hirschsprung_disease)

"Gina does a Christmas party every year and we went last year and it was really nice to speak to families whose children have the same condition," she says. "My husband works with a man whose daughter has Hirschsprung's as well. When Danny was born Zach put up a post and his workmate contacted him to say his daughter has that.

"In our case, raising awareness is so important. So many people don't know about it. When we went to those hospitals after Billy was born, if they had even suggested Hirschsprung's we would have had a diagnosis years ago and he could have been treated earlier. "We've been to hospitals since and mentioned Hirschsprung's disease and had staff asked us, 'What's that?'"

?Jill reads the book My Little Brother Has Hirschprung's by Eric and Isabelle Schnadig to Billy to help him understand his condition.

brothers born with Hirschsprung's disease rare life-threatening condition
'We've been to hospitals since and mentioned Hirschsprung's disease and had staff asked us, 'What's that?'' (Supplied)

"It explains it all and we show him animations on YouTube to explain it," she says.

Both boys ?eat low-fibre diets due to their fragile bowels and digestive systems.

"Billy gets really dehydrated due to his stoma so he is drinking water with Hydralyte in it," she says. "He has wobbly legs and gets tired. And he can't eat certain foods due to his shortened bowel.

brothers born with Hirschsprung's disease rare life-threatening condition
Both boys are on a low fibre diet to help manage their condition. (Supplied)

"He can't have apples, olives, corn, peas and sultanas are dangerous because they rehydrate and become like grapes which can cause obstructions.

"At the moment we are on high alert due to his stoma and we are hoping he doesn't get ?enterocolitis again. It affects every part of our lives. But he is amazing. Both boys are.

"They don't let any anything hold them back."

Find out how you can support families with ?Hirschprung's Disease by visiting the website.?

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