North Shore business owner fights for funding to save daughter's life

North Shore business owner fights for funding to save daughter's life

MANDEVILLE, LA (WVUE) - A North Shore business owner is in the fight of her life, as she tries to save her three-year-old daughter from a fatal disease, that's sapping her strength.

She has found a doctor who is willing to research a cure, but as the clock ticks, she is now on a mission.

Her name is Willow and she's the youngest of Amber Olsen's three daughters.

Just over a year ago, Willow was found to have a rare genetic disease, called multiple sulfatase deficiency or MSD, and it's effects are devastating.

"When they came back and said it was fatal and she would probably die before she was ten, it was the worst nightmare," said Amber.

The disease prevents Willow's body from breaking down and recycling waste, which causes cells to die in various parts of her body.

"And the worst thing is the brain, cells are dying in the brain like Alzheimers," said Amber.

At three, she should be talking, but the disease has slowed her progress. In some cases, it's also reversed gains. Willow used to walk normally, but now she must wear braces.

"Now she can't sit up anymore," added Amber.

Last week, she also got a feeding tube, because her chewing has also slowed down, from a disease, the little girl got, from both her parents.

"We are carriers of the same bad gene, it's a one in a 1.5 million chance you marry the person, it's very rare," said Mrs. Olsen.

Only fifty people in the U.S. have MSD... but hundreds of others suffer from some variation of the enzyme disorder. They could benefit from research into a cure, that Willow's mom, wants to fund. She has found a doctor in North Carolina, who's ready to get started.

"He's a great guy, and he doesn't have time, but he says you have no other chance...no other hope," said Amber.

It's a tall order.  She needs more than $200-thousand to get the gene research started, then several million more to begin clinical trials. And no pharmaceutical company has stepped up.

"There's a family in Ireland with a foundation, and we're working it together," said Amber.

Though some doctors recommend parents just spend as much quality time as they can with kids who suffer from MSD, Amber Olsen refuses to quit.
She just needs financial help to get potentially life saving research, underway.

You may recall the ice bucket challenge, which raised $7 billion for ALS-research. That money helped identify the main gene that leads to ALS.

The Olsen family says the gene which leads to MSD has already been found, so the fight is more than halfway completed. They hope that a gofundme account gets them over the top.  If you would like to help, it's called 'savewillownow'.

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