3 year old fights fast-acting rare blood disease

Published: Aug. 16, 2011 at 3:35 AM CDT|Updated: Aug. 18, 2011 at 11:43 AM CDT
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LAKE CHARLES, LA (KPLC) - A 3 year old boy is fighting for his life, battling a rare and sometimes fatal blood disease. Only two months ago Hayden McCuistion, 3, was just "like any typical little boy. He wants to play outside and go hunting with his dad," said his aunt Shari Eder.

Hayden suffered from a very high fever that persisted. Doctors finally diagnosed him with a rare blood disease called HLH that affects an estimated 1 in 150,000 people.

"I've never seen anything like it. It affects the immune system. It deteriorates the blood," said Eder.

His condition rapidly declined. Now Hayden is hooked up to tubes and machines to help him stay alive and pain-free. He is also heavily sedated, but more than 40 days in the hospital has taken a toll.

"He squeezes his mom's finger, nods his head for her and my brother. He'll communicate by shaking his head or blinking his eyes," explained another aunt, Loretta Causey.

His skin and body is taking a physical beating from the disease. His skin is so fragile that his father, Larry Clark said, "at this point I'm now scared to touch him."

Clark is in New Orleans at Tulane Medical center by his son's side. He described the severe blistering that popped up very quickly on Hayden's skin.

"The blister can almost double in size just by one little incision. Like a bruise he had from two weeks ago where they drew blood. The small little bruise turned into almost a blister base-ball size," said Clark.

"It looks like burns now on pretty much 60% of his body," said Eder.

He loses blood everyday because his platelets, the clotting agent in blood, are not functioning.

He needs platelets every six hours. "If it wasn't for volunteer donors that have sat and taken just a little bit of their time we wouldn't have Hayden here," said Kristi Morris, LifeShare Blood Center.

The disease is attacking his immune system and right now doctors are fighting back with chemotherapy. Causey said Hayden's future is still uncertain.

"It could just take a few minutes and something could go wrong and blood pressure could go low. He does have good days and bad days," said Causey.

Hayden's family calls him their "little warrior."

"He lays there and he'll open up his big blue eyes and just look at you and say 'I'm ok.' He's in a lot of pain, but he's still fighting. He is going to beat this," assured Causey.

"He's a fighter. He's very strong little boy...He's precious, very precious. If you ever meet him, you'll fall in love with him," said a tearful Eder.

Hayden is in need of platelet donations especially from those with AB negative, O negative and B negative blood types. To donate call LifeShare Blood Center at 337-436-4932 and make an appointment. Just say your donation is for Hayden. If you are not one of the blood types listed above you can still donate and Hayden will receive a credit for the donation.

To follow Hayden's progress click on this link to the family's Facebook page.

Copyright 2011 KPLC. All rights reserved.