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Valley baby showing great progress with experimental Niemann-Pick Type C disease drug treatments

Woodrow Miller
Posted at 9:45 PM, Aug 23, 2021
and last updated 2021-08-24 14:25:28-04

A Valley 2-year-old who is fighting a rare and fatal disease is now showing improvement with an experimental drug. Woodrow Miller suffers from Niemann-Pick Type C disease, described as a form of Alzheimer's, among children.

When ABC15 first sat down with baby Woodrow's family earlier this year, his parents were worried without treatment he may not live to see another year.

Denise and Rickey Miller had been fighting hard to get Woodrow enrolled into an experimental drug treatment program, that was not accepting new patients.

However, thanks to pressure from Arizona elected officials and the media, and the company Mandos LLC acquiring the experimental drug from Mallinckrodt Pharmaceuticals, baby Woodrow finally got the green light to start treatments.

Now after multipletrips to a children's hospital in Chicago and five infusions of Adrebetadex, the Millers finally have some hope.

"I'm so excited to see what the future holds for Woodrow," said Denise.

Before they received access to the experimental drug, the Millers said their little boy appeared to be getting weaker by the day.

"Every day that passed was another day that closer to having to say goodbye to him," said Denise.

Now, they are seeing progress, he seems stronger, and more determined.

His mother knows Adrebetadex is not a magic solution. The disease is still fatal, but she has seen the amazing progress other children with the same diagnosis have made after multiple treatments.

"There are kids that have been taking this medication for well over a decade that are now living into their 20s," said Denise.

The Millers say watching their child grow stronger is proof that this medication works.

Some of the side effects include potential hearing loss. So far, baby Woodrow has not experienced any side effects, but Denise said she would take that over watching her boy die a slow and painful death as his body deteriorates with the deadly disease.

The Millers remain hopeful that with the time Adrebetadex is buying their child more time for research that could lead to newer treatments and possibly a cure for all of their children.