Sciotoville couple agonizes over son’s rare disease

From left, Eddie Peck and Missy Messer and their son, Andrew, who has been diagnosed with Vanishing White Matter Disease. The family hopes to meet with a specialist in Maryland.
Deborah Daniels / Daily Times

 

 

"If you have a child, hold them close and tell them you love them and make sure they’re happy. No matter what you do in life make sure they’re happy and never take anything they say or do for granted." — Missy Meser, mother of Andrew Peck

By DEBORAH DANIELS
PDT Staff Writer

The anguish on the faces and in the voices of Andrew Peck’s parents tells the heartbreaking story this family endures.

Andrew’s parents, Missy Messer and Eddie Peck of Sciotoville, recently learned their 3-year-old son has been diagnosed with Vanishing White Matter Disease, a rare form of leukodystrophy — a genetic disorder that affects the central nervous system.


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Messer describes the disease this way: "The nerves in the brain are like a set of wires with a plastic coating over them. In the brain, you have myelin sheath (white matter), and this myelin sheath covers the nerves in your brain. It protects them, and it also is a conductor for the nerves. For Andrew, this myelin sheath is disappearing, so it leaves exposed nerves. The brain can’t signal to different parts of the body without the myelin sheath."

Starting out healthy

Andrew weighed 7 pounds when he was born in May 2005.

"Everything was fine. He was healthy, he was growing, he was normal," Messer said, indicating Andrew was on track developmentally.

"He was perfect," she said.

Then, the weekend after Valentine’s Day, the family’s medical journey — which continues today– began in an effort to find answers to Andrew’s illness.

It started out as a typical day — Andrew was playing with a blow-up punching bag, but then had a muscle seizure — "A full-body seizure and he fell straight back," Messer said. "He didn’t try to catch himself, and after that, his right leg started hyperextending, meaning it was bending backwards. He was having a lot of trouble walking."

Following that episode, Andrew was taken to his pediatrician in Wheelersburg, who then sent him to an orthopedist at Nationwide Children’s Hospital in Columbus. X-rays revealed there were no problems.

"The doctor said there was nothing wrong with his bones, but his right leg was hyperextending, and with that it was pretty much back to square one. We went through that quite a bit — back to square one."

Andrew kept getting worse.

Subsequently, after taking Andrew to the emergency room at Children’s, an appointment was made to see a neurologist.

What followed from there were blood tests, MRIs and X-rays.

"They wanted to start looking at the brain — start going a little deeper," Messer said. Within a nine-to-10 month period, Messer and Peck have seen their son’s health deteriorate.

On March 17, an MRI was ordered by the pediatric neurologist at Children’s. It showed a decrease in white matter in the brain, but doctors didn’t know what was causing it.

"That was the new journey," Messer said, "We knew what it was, but we had to find out what was causing it. That’s when they started doing more tests. They started out with basic blood work, including DNA, to try to rule everything out. Everything came back negative, and by this time it was getting frustrating. It was torture to see him start to disintegrate right before our eyes from one week to the next."

Reliving the past few months and telling Andrew’s story, Messer’s eyes filled with tears and her voice is low and trembling. Peck says he just wants his son to be happy.

Other tests have been conducted, including blood work, muscle biopsy, swallow testing — because of his difficulty in swallowing — EMG (electromyogram), EEG (electroencephalogram) and a spinal tap.

Andrew was also behind on his speech and started having trouble

with the muscles in his mouth.

Eventually, however, it was the MRI taken on Oct. 31 that told the story of Andrew’s illness, and the call from the nurse wasn’t the news Messer and Peck wanted to hear.

"The only thing she would tell me on the phone was that the results came back, and it was worse," Messer said. "In August or September they had started talking about Vanishing White Matter Disease, but they wanted to rule out everything else. Of course, they tell you not to get on the computer and Google it, because you’re not going to like what you see. But, me being me, I’m going to do the exact thing they told me not to do."

Messer said she started her research.

"The more research I did, the more I knew in my heart this is it," she said.

The family traveled to Children’s on Nov. 20 for the news.

"They showed me the MRIs, and they are so profound. I didn’t need an explanation. It was evident the white matter in his brain was vanishing."

As it was confirmed, Messer said she broke down at that point and Andrew’s grandfather had to take him out of the room.

"Andrew is the type of child that he’s so sensitive, so loving and caring. He loves everybody. He’s just so kind and compassionate. Never in my life have I known a child like my son."

Coping with the situation

Messer said she knows she’s made mistakes in her life. She’s a recovering drug addict and has three girls she hasn’t seen in two years, though she continues to try and make contact with them.

"I made a lot of bad choices in my life," she said.

Her concern is for Andrew.

"I feel that it’s very important that my son gets to know who his sisters are, and they should have time to spend with their brother. He shouldn’t be forgotten. They should know who he is. It’s so sad, because he sees their pictures and he knows who they are but he doesn’t understand why they’re not here."

Messer also struggles with the confluence of events — Andrew’s illness and her getting clean from drugs.

"I honestly don’t think I would be clean right now if my son wasn’t sick � I have all these mixed emotions and feelings. I know God has a plan for all of us, and this is just part of the plan he has for me."

Andrew requires 24-hour-care. Messer stays at home and Peck works at Vinyl Kraft. Andrew’s health has put them into a lot of stress, but they continue to stay strong and are faithful members of Narcotics Anonymous.

"It’s so hard on him," Messer said about Peck. "Andrew is his only child, so it’s very hard on him. He had so many dreams with Andrew and those dreams have been shot."

Looking ahead

For Messer and Peck, the next part of their journey is to take Andrew to a research scientist at the Kennedy Krieger Institute in Maryland — Dr. SakkuBai Naidu, who specializes in Vanishing White Matter Disease. There also is another specialist located in Amsterdam, Holland.

They are hoping to see the specialist in Maryland, but have learned Andrew’s insurance is not accepted at the hospital.

"I was so angry," Messer said about the insurance situation. "It’s just not right. We feel that every child should have healthcare that covers anything, especially children with a terminal disease or terminal illness.

The initial visit is $750, so they are hoping to raise money for the visit and traveling expenses.

"We have to get him there — it’s the only place, other than Amsterdam, which I don’t see us ever being able to make it there," she said.

Messer said there are prayer chains and prayer requests for Andrew throughout many churches in the area.

A touching moment for Messer, occurred at a recent NA meeting when she told about Andrew’s situation. After the meeting she was handed an envelope with $100 inside to go toward expenses.

"There are a lot of people that love and care about us," she said. "It will all work out. It’s just getting there that’s the hard part and dealing with all the stress that comes with it."

Facing the unknown

Messer said something like this can happen to anyone. Andrew apparently is sick because of genes he inherited from both his mother and father.

"Both of us had to be carriers of the gene for our son to be this sick," Messer said. "It’s extremely rare, but genetic testing can be done to identify it."

Messer said she has learned Vanishing White Matter Disease can strike in infancy, childhood, teen years or adulthood. She also has learned it can skip generations and it doesn’t always affect all children of parents who carry the gene.

"You can be healthy your whole life, and then become sick," she said.

Messer said she’s not at a point in her life yet where she understands why her son is sick, but offers this: "If you have a child, hold them close and tell them you love them and make sure they’re happy. No matter what you do in life make sure they’re happy and never take anything they say or do for granted."

DEBORAH DANIELS can be reached

at (740) 353-3101, ext. 234, or e-mail

[email protected]

 



 

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