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The Shivers family faced an extraordinary diagnosis of trisomy 16 for their unborn daughter. Their story involves difficult decisions, long periods of time in the hospital, and ultimately, unwavering hope that extended beyond their circumstances. Read more to see how they faced each stage of their journey with trisomy 16 and VSD.
Read More“It’s a place where we don’t have to ask a child what their diagnosis is or how long they’re going to be here. All we need is their name and room number, and then we get to invite them in and let them enjoy just being a kid.” These are the words of Krista Jenkins, Patient Activity Specialist at Children’s Healthcare of Atlanta’s The Zone activity area. One of our heartbeats here at helloHOPE is that a diagnosis doesn’t have to define your child or your family. We loved having the opportunity to chat with Krista Jenkins about how she uses this same philosophy in her work at The Zone. Enjoy a glimpse into our conversation.
Read MoreMary Brantley and her husband Nate were overjoyed when their twins were born healthy at 37 weeks, but within hours their son Ransom experienced respiratory distress, a moment that marked the beginning of their journey with Laryngomalacia and Oropharyngeal Dysphagia. Mary Brantley writes honestly about the ups and downs of their story and the hope that has carried them every step of the way.
Read MoreEach one of us faces dark times. There have been times of both good and bad along our story, but as I look back, the times of discouragement stand out as moments where we saw God carrying us with great clarity. It's in these moments of discouragement when hope is most needed, but it's also these moments when the light of hope tends to be most noticeable and powerful.
Read MoreAs I reflect on the benefit of having a child with a diagnosis, I can’t help but notice how it is positively affecting my other children. My typical children have learned the unique risks and challenges that Ransom faces, and they are learning to help protect him and teach others about him. I see tiny seeds of compassion and empathy growing in their little hearts that I doubt would be growing without our medical challenges. The book God Made Me Unique produced by Joni and Friends is an amazing resource to help children honor and value every person they encounter.
Read MoreAndrew and I had the opportunity to talk with Nathan and Sarah Martin (of Go Forth Goods) about their journey with their youngest daughter Felicity’s diagnosis of TAPVR. Their daughter’s story is one of incredible HOPE, and there are fingerprints of God’s faithfulness in each layer. One of the most beautiful things about our time with the Martins was seeing their determination to grow together as a couple through this, Nathan’s leadership of their family, and Sarah’s sacrificial heart to care for and love her children. Get ready to be inspired.
Read MoreWhen you have a child with a diagnosis, it is natural for your mind to be reeling with uncertainty. Sometimes the most godly and hopeful thing you can do is relax every muscle, close down your Google search bar, and fall asleep. Letting go of these thoughts for the night is a spiritual practice, but the work is all Christ’s. He lovingly takes our burdens and gives us rest. What a sweet exchange!
Read MoreGetting a diagnosis and managing treatments and appointments is already overwhelming, but in the midst of a pandemic, it’s easy to feel even more isolated. Take heart with this encouragement to both ask for help courageously and steady yourself in hope and truth.
Read MoreUnexpectedly, Bethany and Drew learned that their son had experienced a brain bleed — a cavernous hemangioma rupture or pediatric stroke. Although fears and uncertainties hit them like tidal waves, they relied on community and faith to anchor their hearts and minds through the toughest days. Their story of courageously fighting for hope is filled with both hope and wisdom.
Read MoreThere have been times when our story with a diagnosis felt completely overwhelming. And the truth is, that’s okay. You may hear the phrase that God doesn’t give you more than you can handle, but God gives us a deeper hope to hold onto. These tend to be the times when God shows us how much he can handle and how much we can rely on him.
Read MoreA good friend can be a tangible expression of God’s mercy when we least expect it. A friend showed up for us when we felt too low and broken to receive it, but God knew better. Here are a few words of wisdom for showing up well for a family you love who is facing a childhood diagnosis.
Read MoreHave you ever felt like your circumstances were too much to handle? Or like the weight of medical decisions or setbacks made it difficult to see hope in the moment? It’s okay if you feel like you’re in the dark of night or like your burden is too heavy or like you’re uncertain what the future holds. If you’re in a season where you’re struggling to find hope or you are ready for the Light to dawn on you, I believe Jesus is ready to embrace you.
Read MoreDuring medical appointments and therapy sessions, medical professionals usually call on the parent to rehearse the child’s medical history. The conversation centers on those things that are atypical or unhealthy. We major on the cannots since this is the jumping off point for treatment. This is where I get overwhelmed. Here is how I hold onto hope in these times.
Read MoreDr. Rene Romero, Chief of Solid Organ Transplant Services at Children’s Healthcare of Atlanta, was kind to carve out time in his schedule for a conversation about how to help parents who are receiving the news that their child needs a liver transplant. Dr. Romero carries a deep passion for his work, and his extensive background has given him invaluable wisdom. Enjoy a glimpse into our conversation:
Read MoreThe tone in operating room quickly switched from light and airy to hushed after the birth of the Hott’s second daughter. The Hotts were soon told that their daughter had a large birthmark, a Giant Congenital Melanocytic Nevus that occurs approximately once in every 500,000 births. When Rob was allowed to see his daughter, he was surprised to see that the birthmark covered most of their daughter's back and wrapped to the front of her body around her neck and arms. In her first hours of life, Addie was also diagnosed with a rare neurological condition: Neurocutaneous Melanosis. When asked what hope looks like for their family, the Hotts share a perspective that is deeply rooted in personal faith, as well as an awareness of the realities their daughter will face moving forward.
Read MoreHave you ever experienced hurt or sadness or heaviness that made it difficult to find hope? I’ve been here with my experience as a mother of a child with special needs. In my journey I’ve learned that lament is one way — without ignoring the sadness — to reach hope that you can stand firm on.
Read MoreHas your heart ever felt troubled? There are moments all along a medical journey that can cause worry to sneak into the forefront. From times when concerning symptoms first start to show up to medical tests to receiving a diagnosis to thoughts about what the future holds, worry is a common challenge.
Read MoreWe have all experienced moments or even seasons of darkness. One thing that serves as a foundation of hope in these times is the Lord’s light in our darkness. In our rawest moments of pain and heartache, the Lord is there with His presence and peace, illuminating our life. Here are a few recommendations to read when darkness is heavy for you.
Read MoreWhen you have a child with special needs and a seemingly profound diagnosis, panic can creep in. Each month of little progress can cause us to ask the question, “So, what if this lasts his whole life. What then?” We are so encouraged by the wisdom we gained from this courageous and hope-filled mother.
Read MoreThe impact COVID-19 pandemic has been heavy on our hearts. Earlier this week, I shared about how the Lord is helping us to take heart in this season. We’ve been praying through the events of recent weeks, but we wanted to share a prayer that we’ve specifically been praying for our community along with some scripture that has been helping us renew our minds with truth.
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Supporting families facing a childhood diagnosis.
![Helping Our Children Honor and Value Others with Disabilities [Book Recommendation]](https://images.squarespace-cdn.com/content/v1/5d3a161fab57400001d7bc50/1614216742832-5110I6JUJYE6493JZ97M/210224-God+Made+Me+Unique-2.jpg)
