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Precious to God
These are the days that, for Matt and Shannon (Moyer '98) McNeil '98, should be the happiest, most joyful time in their lives. They sing to their two preschoolers, play with them and observe evening rituals of bath time and prayers. But those precious moments are clouded by the fact that the McNeils are watching both of their children slowly die.
Their children, Waverly (age 5) and Oliver (age 2) have Mucopolysaccharidosis Type III (MPS III), also known as Sanfilippo Syndrome. It is a fatal genetic disorder that renders its sufferers' bodies unable to produce enzymes necessary to properly break down sugars. Its early symptoms include hyperactivity and hearing loss; as it progresses, MPS III leads to cognitive and ambulatory losses. Most MPS III children do not live into their teen years. None survive to adulthood.
The McNeils met the summer before their senior year at Taylor. She was a summer orientation assistant; he was taking Greek. They were married after graduation and both worked in the Washington, DC area before his Foreign Service officer's assignment took them to England. Waverly was born in November, 2003. Oliver was born in December of 2006.
Each of the children faced health issues early in their lives. Waverly, or Wavey to Matt and Shannon, seemed uncoordinated and had hearing problems, but was blessed with exceeding amounts of energy. Workers at their church nursery said she was unable to sit quietly in a circle with the other children and that she struggled with crafts. The McNeils believed at least part of the problem was solved when she was diagnosed with hearing loss and began speech and hearing therapy. Oliver too was diagnosed with hearing issues but otherwise seemed to be a healthy, thriving baby.
But it was during Waverly's therapy sessions that something more ominous began to emerge. Doctors said she showed signs of what they called a "basic global developmental delay," leading to a battery of genetic tests. An MRI revealed there had been a decrease in white matter - one part of Waverly's brain was shrinking, and the other part was not growing. The doctors tested her for MPS III, but it would be a month before they would learn anything concrete.
The day the family got the test results, their doctor entered the room flanked by several specialists. As one of the doctors led Waverly to another part of the room, the McNeils were told their daughter had MPS III, and that she was going to die. When apprised of the genetic nature of the illness, they also had Oliver tested. After another seemingly endless month, their worst fears were confirmed - he too would die from the disease.
"It was just surreal," Matt reflected. "It was one of those experiences where you feel like you're watching your life happen. We had dreaded that news for a long time. We had a test result - it brought an odd sense of relief to know what it is you are up against."
"My first heart reaction was utter devastation," Shannon said. "Every time I looked at Waverly, I was overcome with sadness about all the things she wasn't going to be able to experience. I still am. You really can't get past that point. I wanted to see her go to school and see her have best friends and sleepovers and get married and have babies. It was sad that she was not going to have all of those experiences."
The family has since relocated to the Washington area where they can be closer to specialists and family. Shannon said there are day-by-day reminders of the illness. Waverly's descent, which began shortly after her third birthday, has begun to accelerate. "We don't know what the impact of the disease is going to be on Waverly in the next year," she said. "We look at Oliver and feel so sad because this is our final year before he starts to decline. In my mind I feel like a clock is ticking down to his third birthday."
When asked where God was in all of this, her answer was candid. "Sometimes I don't know. Honestly. I have struggled with being very angry and asking ‘Why? Why on earth is this happening to my beautiful kids?' Nothing is ever going to make the fact that the kids are dying worth it. But going through process and having people fall in love with Waverly and Oliver makes me very proud," Shannon said. "People have said, ‘I used to have a really strong faith but have struggled with my faith recently, yet I was compelled to pray for your family.' That makes me excited that my kids might be pushing people back to a relationship with God.
"Am I still angry and frustrated? Absolutely," Shannon admitted. "But I think it was Michele ([Von Tobel '98] Montenegro) who said, ‘If you're angry, you're angry. But just keep the relationship going.' I am still crying and shouting, but still believing and hoping."
"I know God loves my kids and wants wonderful things for them. There is something praiseworthy in all of this. He has seen fit to be involved with us. He is interested in us, and is refining us in all of this," Matt said. "To a world that believes an inconvenient life is not worth living, I hope our love for our kids is a testament to the fact that all are made in God's image and precious to Him."
To learn more, visit:
www.ahundredforahome.com
http://familymctravels.blogspot.com.
