I’m Ashley Maple. Here’s how I’m living deeply.
“When Archer was born in 2010, I remember looking at him in the hospital and having concerns about his facial features, particularly his wide nose bridge. Archer did initially fail his newborn hearing test, but he passed when retested at a later date. And other than some nursing and weight gain issues, he seemed healthy. At six months old, however, he developed nystagmus- a rapid movement of the eye. That was really his first marked symptom, which led to a lot of vision tests and initially a misdiagnosis of Leber congenital amaurosis. The specialists said he was legally blind. They were going to set us up with in-home visual impaired services. However, by his first birthday, Archer still couldn’t even sit up. His head control was very limp, like a newborn’s. I told the doctors, ‘I’ve had three typically developing children up until this point, and this is not normal.’ My concerns were attributed to his low vision, and I was assured he would catch up over time. I had signed up for newsletters from the Foundation for Retinal Research, trying to learn as much as I could about his retinal disease. One of their quarterly newsletters I received in the mail was the key to uncovering Archer’s real diagnosis. It mentioned children with Archer’s retinal disease who were actually found to have PEX1 mutations- a gene linked to Zellweger spectrum disorders. I looked up Zellweger disorders and Archer had many of the symptoms. Even my husband Ryan still doubted that he had that, plus he recognized that I had a tendency to worry. That article, however, was really the start of requesting the correct testing that led to his actual, devastating diagnosis.
I took what I’d learned to the geneticist, but he said, ‘I don’t think he has that disorder.’ We had to wait months for the testing, then more time for results. Finally, at 18 months old, Archer was found to indeed have two PEX1 mutations, and he was diagnosed with Infantile Refsum disease, now called PBD-ZSD: Peroxisome Biogenesis Disorder, Zellweger Spectrum Disorder. PBD-ZSD is a rare, terminal, metabolic disease affecting every major bodily system- the incidence is about one in 50,000 births. Because Archer was still living at 18 months old, he didn’t have the severe form. But he still had hearing and vision loss, developmental delays, low muscle tone, a lack of physical coordination, and a shortened life expectancy. We were told Archer wouldn’t live past age 10. I don’t think that really sank in at first- I just don’t think you can ever imagine your child dying. It was very abstract. Life was so busy- I was homeschooling our three older kids, Ryan was in the Marine Corps, we were moving around a lot. Once we got the diagnosis, we just immediately went into ‘What do we do now?’ mode. Surprisingly, it didn’t shake our faith initially. We were very involved in our church at that time, and I wasn’t mad at God. We started seeing specialists and got connected to an organization started by two mothers called the Global Foundation for Peroxisomal Disorders, which has been an incredible source of support and knowledge over the years. We tried to adapt, cope, and get Archer’s medical needs met… but having a child with a terminal disease, we still felt incredibly isolated. When Archer was around three, we stopped going to church, and looking back, I can’t remember exactly why, other than it felt like a combination of factors. Ryan deployed regularly with the Marines, and we moved often, which meant frequently starting over. Archer’s disease left us feeling disconnected and overwhelmed. Getting to church was logistically challenging. When he was younger, we couldn’t take him into the sanctuary, to Sunday school or to the things same-age peers were doing. During that time, I really struggled with my faith. What I recall is that I felt far away from God.
Archer is now 14 years old, and he’s exceeded the lifespan we were told to expect. Archer is totally dependent on us, his caregivers, for all of his daily living activities and to ensure his safety. He received a feeding tube at age 9 due to lifelong feeding issues, and cochlear implants at ages 11 and 14 due to progressive hearing loss. He has liver disease, adrenal insufficiency, and is deafblind, among other issues. Over the years, as the disease has progressed, he lost his ability to walk independently and now crawls if he doesn’t have assistance. This has been absolutely devastating because he has always had such a strong will to be mobile and explore his world. Despite this regression, he’s so happy, lives to be joyful, and we laugh every day. We even have a game we made up where he wants me to fake laugh, and we just end up laughing for real. Archer’s middle name is Matthias, which means ‘gift of God’- and we gave him this name at birth, well prior to knowing about his peroxisomal disorder. And that’s truly what he is- pure innocence and joy, always spreading joy to other people. God has given us such a precious gift in Archer’s joyful, persevering spirit. He’s extremely social and loves riding the school bus to Halls Middle School, where he will be in 8th grade this year. Archer loves being around anyone and everyone.
After moving to Knoxville in 2022 after Ryan retired, we enrolled Archer in Summerstars, a summer program for children with special needs through Cedar Brook Outreach. The director would send out newsletters about community events, and one email shared about a family encouragement conference for special needs families at CSPC. I thought, ‘That sounds amazing!’ The conference provided childcare, which was always difficult for us to find, so we could actually attend! I was shocked when I learned, through that conference, that CSPC had a special needs ministry. We’d been out of church for so long, it didn’t even occur to me that some churches had started developing programs like these. Archer had an amazing buddy at the conference, and after speaking with his buddy and learning more about the special needs program, I felt that we should visit CSPC one Sunday. I was still in awe that a program like that existed! We decided to visit CSPC, though it was 7 months after that conference, because of several factors, including a 2nd cochlear implant surgery and recovery period for Archer. But when we finally went, we knew we had found a special place. CSPC welcomed Archer and made us feel welcome, too. Because we felt that God had clearly led us back into a church family through Archer and the special needs ministry, we decided to become members through reaffirming our faith in Christ. At the first membership meeting, the leaders mentioned getting involved in ministry. The first thing that came to mind, due to my interpreting training and previous career in sign language, was the ASL ministry. During Ryan’s military career, we asked God to show us churches that needed a sign language interpreter because I was no longer able to work while homeschooling our children. He showed us this three times, and that is how we would find our church homes wherever we were living at the time. But I had been out of interpreting for so long by this point (10+ years) that when I found out CSPC had an ASL ministry, I thought there was no way I could be involved, and honestly completely dismissed the thought at first.
After our members’ meeting that discussed joining a ministry, however, I began to question if I should become involved, and if God was moving me in that direction again. I texted Ashley Paul, who leads the ASL Ministry at CSPC, explaining my past experience and asking if they could use me. She told me she’d prayed for another interpreter just hours before I texted her because the other interpreter was moving soon. This was even more confirmation CSPC was were where God wanted us to be, and I will always be in awe of how this all came together. From the special needs ministry to the ASL Ministry, everything really has come full circle. Archer’s diagnosis led to us eventually leaving church and stagnating in our faith. But it also brought us back as God was calling us (and other families like ours) to CSPC through the special needs ministry. I regret not walking closely with God for so many years. But I have so much perspective now that I value, looking back and realizing how God was with us through all the immense challenges of being a military family while at the same time navigating a rare disease. I can also see how God was faithful during Ryan’s military career- providing for his safety during deployments and giving me strength to be alone with our four children. And most of all, I can see now how patient He’s been with us. He was with us all along, through everything- waiting for the right time to guide us back. Now it almost feels like we were never apart, and we are eager to grow in our faith. Archer just attended his first vacation Bible school. His favorite song was ‘Let’s Trust in Jesus,’ and we have listened to it many times since then together. For him to hear Jesus’s name, and praise Him and enjoy Him for the first time in his life- it’s an incredibly precious thing. A couple months ago, I felt I should start praying at night with him. To keep it simple, I start by saying, ‘God, thank you for __, and I let Archer fill in the blank. He always starts by saying his own name… and that is my own prayer too, every single day we get to spend with him. God, thank you so much for the gift of this sweet boy and for choosing us to be his parents.”