By SERINA MARSHALL
Staff Writer email@example.com
When Valerie Phillips’ son was diagnosed with an incur- able disease at age six, she used every moment left with him to turn the pain into purpose – eventually telling his story in a book called, “I Love Him More.”
“Nick was diagnosed with a degenerative neuromuscular disease at the age of six. This book is about our family’s journey through the horrors of his diagnosis and disease, but yet, how in place of where you wouldn’t expect it, God was always there and sometimes, we didn’t see it at the time,” she explained. “And sometimes we didn’t see it until many years later, but He was there in the midst of all this horror.
“First of all; it’s a book about Nick and his courage and heroism and how God used him in such a mighty way to influence lives. And it’s also a book that I want to bring glory to God.”
Adrenoleukodystrophy is a rare genetic condition that causes the buildup of very long chain fatty acids in the brain, according to Phillips – and this is what her son Nick was diagnosed with.
“When my son was diagnosed in the year 2001, I had never heard of adrenoleukodystrophy, and I was a nurse at the time,” Phillips said. “He was this healthy little firecracker.
He went to kindergarten, and he hated it. We thought he just hated it because he had a very free life. We then had a meeting with his teacher, and she told us that his handwriting had deteriorated. From there, we took him to a pediatrician who told us he had an ear infection, which we treated with antibiotics.”
However, after the initial visit to the doctor, Nick began losing his balance Phillips said.
“I noticed it on Thanksgiving Day and took him to the pediatrician again,” she said. “He had a CAT scan of his brain, and it was abnormal. We ended up going to a neurologist and it took us seven weeks of torture, with him deteriorating every day in front of our eyes.”
The family ended up having to go to Duke to have blood- work done to send to Kennedy Krieger Institute in Baltimore, which Phillips said, was the one place in the nation that tests for Adrenoleukodystrophy.
“They called us back a couple of days later from Duke and said that he had a disease called Adrenoleukodystrophy and that the only treatment at that time was a bone marrow transplant,” she explained. “To get a bone marrow transplant, you had to be in the early stages of the disease, and we didn’t know anything was going on until the disease on his MRI showed very advanced. The doctor then told us it was a terminal illness and he recommended hospice. Nick was six years old. Our life, which was very happy and blessed, was shattered.”
Nick was given a life expectancy of a year because his disease was so progressive, but Phillips said that he lived 17 and half years after that projection and left them at the age of twenty-three.
“The name of the book, ‘I Love Him More,’ people assume that’s something I say. The truth is, a year and a half after Nick was diagnosed with this disease, we were doing the best we could and taking it a day at a time,” she said. “Nick was a bundle of joy despite losing his abilities
to speak, eat and ambulate. His mind was still sharp and wise. It was a torturous disease and we adored him – we still do.
“I was so mad at God. I tell in the book how I tried to not show it in front of Nick. But when I was alone, I would cry out to God in anger for a year and a half. I couldn’t read my Bible. I didn’t find comfort in the church songs I always had; they just made me mad. I didn’t feel the love of God. Then one night when I was crying out to God in my little bathroom where Nick couldn’t hear me, I was yelling ‘Why God why? I love him so much!’ God said to me ‘I know. I love him more.’ And it began to change my heart.”
In that moment, Phillips said she felt enveloped in God’s love.
“That’s been over 20 years ago, and I can still feel that love,” she said. “Here I’ve been mad a year and a half and He wasn’t mad at me. He gave me six words in one moment that were really the only words I needed to hear. I had forgotten in all this torture and agony that God loved Nick more than me. He loves me more. He loves you more. God loves us more. And it began my journey of healing and recovery back to a place where I could start to get over that anger.
“It took me a long time of reading in my Bible for answers. There are still so many more questions than answers and answers you don’t want to hear. I didn’t want it to be my son. I still don’t. But it’s a book about my son and his courage and my God and His love.”
Though Nick passed away in September of 2018, Phillips said their family is grateful for the time they were given with him.
“If I could tell others going through this same pain, don’t be ashamed to feel whatever it is you feel. No matter how horrible it is or if you’re mad at God and feel hopeless; it’s okay. It’s human and real. Don’t hide it because that’s when it becomes dangerous,” Phillips explained. “Feel what you feel; there’s nothing wrong with it. There are no wrong feelings. Sometimes the only thing you can feel is hopeless. But don’t bury it.”