Serving Alongside Disability in Mission
We are grateful for this opportunity to visit with Paige Snedeker. Paige is the founder of The Paige Project, a ministry that shares the gospel of Jesus Christ and that inspires hope and strength amid adversity—something of which Paige is well acquainted. As her memoir, Paige’s Pages, reveals, she and her two brothers have struggled with Riboflavin Transporter Deficiency (RTD Type 2) since they were very young.
According to NORD, the National Organization for Rare Disorders, RTD is a rare disorder that damages nerve impulses. Communication between the brain, spinal cord, and muscles are weakened, if not completely lost. The damage can affect much of the body. As exhibited in Paige’s own life, RTD can require a wheelchair. It can damage eyesight, hearing, swallowing, or even breathing.
Nonetheless, in addition to writing Paige’s Pages, which was published earlier this year, Paige wrote and illustrated Sofia and Her Morningstar as well as Camo’s Journey. She also teamed up with author Michelle Medlock Adams to illustrate I Love You the Mostest. Nerve damage prevents Paige from using her hands, but inspired by Joni Eareckson Tada, Paige uses a technique called “mouth painting” to illustrate children’s books. In the Q&A, questions are being asked by Kevin Avery.
Kevin Avery: Thank you so much for joining us today, Paige. I recently finished reading Paige’s Pages. It’s such a wonderful memoir. Thank you for pouring out your heart, allowing us—the readers—to see your pain and struggles. In turn, we can join you page by page as you embrace faith in Christ and find strength, even joy, through this journey.
Paige Snedeker: What a joy it is to hear you say this about Paige’s Pages. God is so good! And thank you for this wonderful opportunity to serve alongside Disability in Mission.
Kevin Avery: I appreciate how you just expressed that—to serve alongside Disability in Mission—because this is exactly what with this blog aims to do. We come together—serving alongside each other in mission—for mutual encouragement and insight. In this Q&A, we are eager to glean insight from you as you share about your ministry, but first, I want to ask about your RTD diagnosis. We know that you started having symptoms as a toddler. How old were you when you received a diagnosis?
Paige Snedeker: I was 23.
Kevin Avery: 23? Two decades before knowing a diagnosis? That’s a long time.
Paige Snedeker: Yes, and it was 27 years for my family since my older brothers were dealing with RTD before I was born. But I’m so grateful for the day we began learning about the diagnosis.
Kevin Avery: Would you describe what happened that day?
Paige Snedeker: Out of the blue, I got an email from Joni [Eareckson Tada]. My family and I had known her for a few years by then, and she had become a dear friend. In the email, Joni talked about how she had met a family with two adult children. Their challenges were very similar to my brothers’ and my disorder. As I read Joni’s email, the hair on my neck and arms prickled. I was amazed how similar their family situation sounded to ours. It was like another version of my family. There was also a picture of the adults, and they even looked like me and my brother Tyson.
‘How could this be?’ I wondered. My entire life, I’d been isolated and unlike anyone, except for my brothers. I had given up hope long ago, but there was now a glimmer of hope deep, deep down in my heart. We got in touch with the family and had a conversation. After that, we had our blood tests done. About two weeks later, we finally received a diagnosis for RTD! Wow, what a joy! I had never dreamed of this day! We could finally start treatments to slow down disease progression. I’m forever thankful for Joni. She has brought so much light to our lives.
Kevin Avery: It is so great—amazing—that your connection with Joni led to this diagnosis. Thank you, Jesus! But for clarity, when you said you had given up hope, you meant that you had lost hope of learning your diagnosis, correct?
Paige Snedeker: Absolutely! Symptoms had just been getting worse and worse for years, and we didn’t know why. We were literally in the dark. I could barely see or speak. I could no longer hear. I was deaf, and with every shallow breath, it felt like I was losing the last of my humanity. But Jesus was always with me. So yes, I no longer dreamed we could know a diagnosis, but in weakness, the joy of the Lord was and is my strength.
Kevin Avery: Amen. You clearly look to the Lord for strength and hope in life, but do you ever have days when this great faith waivers?
Paige Snedeker: Yes, there are some days when I struggle and feel discouraged, but when I’m reminded that God is my unshakeable strength and hope, I draw true joy and knit closer to Jesus. There are many days when we will face trials in life. We may feel weak because of the challenges set before us, but Philippians 4:13 shows us no matter our disabilities, God is our true strength. Philippians 4:13 (ESV) says, “I can do all things through him who strengthens me.”
Kevin Avery: I agree it is such a wonderful verse, and I love how you describe your 4-year-old self in chapter 2 of Paige’s Pages. Your fingers had become too weak to hold anything, but you discovered your toes could draw with markers. You could still add color to the page. It’s beautiful. However, how can we keep this verse in its context? The verses before and after 13 speak of contentment. As Philippians 4:11 highlights, the Apostle Paul has learned to be content in any situation. No matter what disability we face, then, we should be content. Paige, how are you able to be content with the limitations of RTD while still doing all things through Christ who strengthens you?
Paige Snedeker: I fix my eyes on Jesus. This is how we can do it. Knowing that Jesus Christ is my source of strength, I find great contentment in him. Also, as I follow Jesus, I know that I will have the power to share the gospel with others because this is what I’m called to do. This is what we are all called to do. As Paul says, we can rejoice in our suffering, even when we’re faced with hardship. For when we are weak, then we are strong.
Kevin Avery: Amen. 2 Corinthians 12:11.
Paige Snedeker: Yes. I want others to know what a joy it is to have Jesus! I understand it can be challenging to share the gospel, but thinking about the joy it is to see others come to know Jesus Christ is more than worth it.
Kevin Avery: I hesitate to ask my next question because I do not want to minimize typical struggles when sharing the gospel. Fear is an obstacle that affects all of us. Nonetheless, because most of us reading this blog either have a disability ourselves or are closely aligned to someone who does, I will still ask. What do you have to do before giving your testimony, like when you speak to a youth group? What is required physically and spiritually?
Paige Snedeker: I require nurses to help me get ready for events, and I require an interpreter to facilitate with conversations and voicing for me since my speech isn’t clear. Also, someone must drive me to the event. Before giving a speech, I pray to ask the Holy Spirit for wisdom and strength that I may share the love of Jesus Christ with accuracy and confidence.
Kevin Avery: So it is a major event for you to give your testimony, which depends on help from many people. The same is true when you are sharing your testimony through writing, correct? I know it was a long journey for you to write Paige’s Pages.
Paige Snedeker: Yes. It is a huge process, and it’s not easy, but I have learned that being dependent on others doesn’t take away from my own independence. Working together—to serve alongside each other—adds to our identity. On our own, we can’t achieve much. All of us are better together. This is a lesson God has been teaching me these many years.
Kevin Avery: Which is why you find it a joy to serve alongside Disability in Mission.
Paige Snedeker: Yes. No matter the challenges I face in life—the suffering, the near-death experiences—life is still a gift of God and a treasure. And we are to do this together, as the body of Christ. We’re only given one chance to live and worship God on this side of eternity. Even amid hardship, God is always there with his children. He will never forsake me—he will never forsake us—which is made clear in Hebrews 13:5 (ESV) – “Keep your life free from love of money, and be content with what you have, for he has said, ‘I will never leave you nor forsake you.’” God is a good and gracious God! As I think about everything that has happened to me and about how God has been with me every step of the way, I know that the true gift of life is through salvation in Christ. It is this understanding that gives me joy. It is, as David writes in Psalm 51:12, the joy of my salvation.
Kevin Avery: Thank you, Paige. As we conclude, would you tell us what you are currently pursuing? How can we pray for you?
Paige Snedeker: My goal is always to inspire people to overcome adversity with the strength and hope of Jesus Christ. Please pray that God will continue to grow the ministry and work in the hearts of The Paige Project team so that we can fully serve God and his people!
Kevin Avery: Amen, and finally, I want to ask about your necklace. You have mentioned in Paige’s Pages that it had belonged to your brother David. We know that RTD ultimately led to his death. We are very sorry about this. In a continuation of his legacy, would you please explain how David has impacted your life and ministry?
Paige Snedeker: My brother David is the light and joy of my heart. God used him to show me what it means to love like Jesus and to serve like Jesus. His passion for God ultimately led me to know Jesus and share the same hope we have found. May we all share the love of Jesus with those around us.
Paige’s Pages: A Story of God’s Strength in Impossible Circumstances
Paige’s Pages is the inspiring story of a young woman who has spent most of her life battling an undiagnosed disease that has threatened to take her life countless times.
