Resources
For parents, caregivers and loved ones of rare kiddos. We would love to add to our list. Please feel free to contact us to recommend other helpful resources.
Global Foundation for Peroxisomal Disorders
Specifically for families affected by Zellweger’s and Peroxisomal Disorders, their mission is to improve the lives of individuals with Peroxisomal Disorders by funding research, championing scientific collaboration, and empowering families and professionals through educational programs and support services.
Healthcare App: Mejo
A healthcare app built for the caregiver by a parent of a rare kiddo. It is a better way to simplify, organize and share your kid's most important medical & care information all in one web app. Organizing our rare kiddo’s specialists, meds, appointments and overall medical information felt like a full-time job. This tool keeps it straight and is SO much better than the sheets, and project management tools we’ve tried in the past.
Faith-based Book: God on Mute by Pete Greig
Pete Greig presents an honest, soul-searching pursuit of biblical answers to one of the most challenging questions in Christian faith: What do you do when God meets your prayers with silence? This was one of the first books we read as we struggled with our faith through Lo’s diagnosis.
Faith-based Book: Without a Word by Jill Kelly
This memoir takes the reader into the lives of a celebrity couple, Pro Football Hall of Famer Jim Kelly, and his wife, Jill, to reveal the Kelly family's private struggle and how eight and a half years with their severely disabled, terminally ill son, Hunter, unfolded in a redemptive and transforming manner. This was another book I found helpful while processing Lo’s diagnosis.
Rare Kiddo Podcast: Once Upon a Gene
Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.
It’s really, REALLY great content for parents and loved ones of rare kiddos.
Faith-based Audio Devotional: Prayer 24/7
Inspired by Lectio Divina, a way of meditating on the Bible that’s been used by Christians for centuries: follow daily Bible readings, thoughts and prayers that follow a simple P.R.A.Y rhythm:
P:ause to be still.
R:ejoice with a Psalm and R:eflect on Scripture.
A:sk for God’s help
Y:ield to His will in your life.
This daily morning and evening audio prayer became a staple for Jake and I as we struggled through questioning, mourning, surrendering, finding joy and peace - when finding the words for our own prayers was at times too hard.