READER REPORT:

Little battlers: Dylan is a fighter

IMOGEN WILSON
Last updated 05:00 12/02/2013
Stuff nation
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FIGHTER: Dylan won't give give.

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Dylan is a little fighter who is still fighting. She has progressive familial intrahepatic cholestasis (PFIC), a rare disorder where bile salts can't drain from the liver. In many cases PFIC can cause irreversible scarring, causing liver failure, and resulting in the need for a liver transplant. Dylan is at this stage now. 

When Dylan was 13 days old her mum, Emma, noticed a little bruise in the middle of Dylan's thigh. She thought it was odd, but figured they must have bumped it on something. The next day she felt a big bump on Dylan's clavicle. Dylan's dad, Eric, got a worried as his cousin had a rare childhood cancer that was in the same place, so they decided to see the GP. The next day they found another bruise at the bottom of her ribs.  The day of the doctor's appointment, they found another bruise on her back. 

When Dylan's liver function tests came back abnormal, the rollercoaster ride really began.

After spending four weeks on the ward with numerous blood tests and a hidascan, the hardest thing for Emma and Eric was starving their two-week-old baby for eight hours for a scan where Dylan wasn't able to eat beforehand.

The doctors slowly ticked off a huge list of potential conditions. After several biopsies, it looked like PFIC, but they were unsure which type, as there are three. The doctors said she had some scarring on her liver but not a lot, and that she may need a transplant in five to 10 years. Tests were sent to a research lab in London and when the results finally came back three months later, the family returned to Starship. 

Meanwhile, Dylan was fed through a tube and needed five doses of vitamins A, D, E and K each day. Dylan kept getting worse. After more bloods and more tests, an MRI showed Dylan needed a transplant within the next few months. She was seven months old.

Emma's sister Fern put up her hand as a possible live donor for Dylan. She took many tests and was finally cleared as a match.

On Christmas day, a couple of weeks after having a six-hour operation where 20 per cent of Fern's liver was removed and transplanted in to Dylan, Dylan turned one. It wasn't until Dylan's liver was removed that it was discovered to be riddled with cancer. Dylan was in end stage liver failure.

Day to day life is a rollercoaster of blood tests but Dylan is doing well and the family is coming to the end of their three-month recovery stay in the hospital's liver transplant apartments and the Ronald McDonald House.  Emma is a friend of mine and she is an amazing woman. Calm, collected, with an older child to juggle as well as Dylan.  The family usually lives in Wellington, and Emma is handling everything amazingly, considering the majority of her support network is in another city.

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Dylan is such a fighter. Her strength and that of her mother is a testament to the strength we can find when it is our only option.

Please remember to have the talk with your family about organ donation. Think about it and talk about people like Dylan. Something so amazing can come from something so sad.   

Follow Dylan's journey on Facebook.


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