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Religion

Faith in God shelters family of two

Their Habitat for Humanity home casts light on the plight of a nurse and her daughter, who has a terminal illness.

By GAIL HOLLENBECK
Published April 16, 2005

INVERNESS - Melissa Moore said she feels like a celebrity and with good cause. The story of this courageous young woman and her dedicated mother is featured in the May edition of Ladies' Home Journal magazine as a "Habitat Family."

The article, "Our Faith Keeps Us Strong," tells about the home Melissa, 23, and her mother, Pat, partnered in building with Habitat for Humanity of Citrus County. It also talks about Melissa's terminal degenerative nerve disease - neurodegeneration with brain iron accumulation, or NBIA - and the struggles she and her mother have been through since her diagnosis in 1996.

"It's nothing new," a gleeful Melissa said of her fame.

Indeed, Melissa was featured in a local paper when she met with musician Tom Petty through the Make-a-Wish Foundation, the subject of a feature article in the Citrus Times when she and her mother moved into their new home in February 2004 and the subject of an article Pat wrote for the Habitat newsletter and online site.

"Being in the magazine is cool," Melissa said. "I loved it. My mother read it to me."

The article came about when the Moores' story was selected by Ladies Home Journal from those submitted by the central office for Habitat for Humanity.

"I guess because we're not the typical family for Habitat," Pat Moore said.

There is no doubt Pat Moore is not the typical mother. The 54-year-old registered nurse spends almost all her time caring for Melissa, whose condition is deteriorating. NBIA is a rare, inherited, neurological movement disorder characterized by the progressive degeneration of the nervous system, according to the NBIA Disorders Association Web site. The common feature among all individuals with NBIA is iron accumulation in the brain along with a progressive movement disorder, the site says. "The prognosis is poor and she will get progressively worse," Moore said. "Recently she's had more problems eating and a lot of times I've had to feed her. She has to wear a diaper now all the time, so over the past year she's gotten quite a bit worse."

Caring for her daughter is what is normal for a parent, Moore said.

"A lot of people have told me they think it's wonderful what I'm doing, taking care of her. But I think that anybody who has a child would do that for their child. It would be unthinkable not to. It's not easy, but it's something most mothers would do."

Moore, who is divorced from Melissa's father, developed a herniated disk in 2002 and became unable to work as a nurse. While that allows her the time to care for Melissa, it has created financial hardships. One thing Moore hopes is that the article in Ladies' Home Journal will call attention to the fact that children's disability payments stop when they reach age 21.

"There's always the possibility of me finding some kind of work that's part time, but without assistance, I can't do that because I can't afford to pay an agency $16 an hour to send somebody out here to stay with Melissa," Moore said. "There's a lot of people in that situation. It seems between the ages of 21 and 65 until Social Security kicks in, a lot of these disabled people are kind of left in limbo and so are their families. It would be nice if some focus could be put on that."

The Florida Children's Medical Services takes care of severely disabled children until they are 21. Then they are put into the adult Medicaid program.

"That doesn't take care of a lot of their needs because they have more needs than a normal healthy person who's that age," Moore said. "Luckily I got some equipment for Melissa before she turned 21."

The program allows for an aide to come to the home for 45 minutes each morning to help Melissa shower. With her back, Moore is unable to do that.

To help make ends meet, Moore sells Mary Kay cosmetics. While she can't give cosmetic parties in people's homes because she never knows when Melissa will be sick, she can take catalog orders and sell products by phone.

Melissa has a $560-a-month Social Security benefit, and Pat Moore is able to take $450 out of her 401K each month without penalty.

When Melissa was first diagnosed, her mother went through a grieving process.

"You know what she's not going to be capable of, so you kind of grieve about all those things at that time. I'm sure when she dies there will be a grieving process again, but you've already grieved a lot of it. You do it one day at a time and just go on."

Moore says it is God who has sustained her.

"God has taught me patience and I've learned to depend on him," Moore said. "There's nothing I can do without him. He is what keeps Melissa going; he's what keeps me going. There would be times you would be ready to give up but because you have God there supporting you, you don't."

Melissa agrees with her mother.

"God put me on this earth and gave me that disease for a reason," she said. "So if he has a reason, then down here I need to deal with it. I trust him."

Melissa said she is looking forward to going to heaven.

"I'm going to jump rope like I used to and do hula hoop and play golf and all that other good stuff," she said.

Pat Moore said she is thankful for the support she has gotten from the people at her church, Gulf to Lake Baptist, who pray for her and Melissa regularly and who helped in building the house.

"God works through his people," Moore said. "A lot of times I thank him for putting these people in my life, because I know that was his doing. He knew I would need their support."

Melissa sings with a women's choir at the church.

"I like to socialize with the people at church," Melissa said. "When they pass me, they notice me and the smile on my face. I love socializing. God has taught me so much I can't even put into words. I love him with all my heart and soul."

Moore said she prays throughout the day for God's guidance and help. And she has a special prayer for Melissa.

"A lot of times I've prayed that when it's time for her to go that Jesus himself comes to get her," Moore said. "That would be very, very comforting."

She believes there is a purpose for Melissa's illness.

"Maybe Melissa's purpose has been to bring people closer to God. That's what I believe God's purpose is in a lot of things, to draw people closer to him. I know that through her I've gotten closer to him and through her example and her faith a lot of other people have been drawn closer to him. And that's the important thing."

Habitat for Humanity of Citrus County needs dedicated volunteers to help with its program of building homes for people like Pat and Melissa Moore. If you can help, call Terry Steele, executive director, at 563-2744. For information on ordering Mary Kay cosmetics from Pat Moore, call 726-8510.

[Last modified April 16, 2005, 02:45:13]