Real Life
Featured Families
Meet the Arce family: Chris, Nicole, and Camden. Camden was born on April 7, 2023. Camden spent the first month of his life in the NICU due to struggles with thermoregulation and feeding. He graduated from the NICU in May, but the journey was only beginning. Due to continuing development struggles, Camden was referred for genetic testing at 3 months old. On his 5th month birthday, the family received the news of his SPTAN1 diagnosis. At first the diagnosis was devastating. Unfortunately, Camden's mutation is one of the most severe. As time has passed since the diagnosis, the Arce family has learned that even with immense grief, their is still opportunity for joy.
Camden's SPTAN1 diagnosis is only part of his story. Anyone who has had the pleasure of meeting him knows him as the spiciest little red head with a famous side-eye. He loves to be included and involved in what's going on in the world around him.
Chris and Nicole set a goal early after Camden's diagnosis to give him a life rich of love and experiences. As a family, they love to go on adventures. The beach and Mammoth are some of their favorite places to visit. Nicole was previously an elementary school teacher. She enjoys finding ways to adapt the world to make it more accessible for Camden. Chris is the adventure planner and is always looking for new places to experience as a family.
If you would like to support the Arce family on their journey, you can visit their Camden Strong Bonfire page.
Meet the McFaddens: Riley, Kayla, Riley Jr., and the newest light of their lives, Elise. Born on October 27, 2023, Elise entered the world wide-eyed and curious, taking everything in. Shortly after birth, she was transferred to the NICU due to concerns about seizures and clonus. Two weeks later, she was discharged home, but her journey was only beginning.
Feeding challenges and missed milestones soon followed. At just three months old, genetic testing revealed an SPTAN1 mutation. Elise’s deletion is considered on the severe end of the spectrum—a diagnosis that was incredibly hard to come to terms with. There is deep grief in knowing the “typical” life Elise won’t experience, but also profound gratitude for the life she is living: one filled with health, happiness, and the unwavering love of her village.
Elise has a gift for stealing hearts. Her beautiful brown eyes framed by the longest lashes will melt you instantly. Her giggles and smiles regularly bring her family to tears. She delights in every sound—her brother’s playful screeches, Benson Boone’s songs, and even her mom’s “less-than-perfect” singing. She’s always perfectly polished with her nails and hair done, because Elise is, of course, a little lady.
Full of surprises, Elise keeps her family on their toes every day, reminding them of the beauty in small moments and the strength that comes from love.
Here's a fun IG account that shares tips, toys, and cute adaptations for parents of medically complex kiddos. Check it out!
mejo is your ultimate digital assistant for caregiving, revolutionizing how you support you and your loved ones by centralizing all information to make caregiving more efficient and effective.
Fun Finds!
Online Community
Follow Hope for SPTAN1 on Instagram: @hopeforsptan1
Join the SPTAN1 Facebook group.
This is a private group for those who have a family member with SPTAN1 or for adults living with an SPTAN1 mutation.
Follow Hope for SPTAN1 on Facebook
Family Support
Care 4 the Caregivers was created for caregivers, by caregivers who often feel isolated and overwhelmed. We connect like-minded individuals by providing them full access to all of our resources. They offer an informational space, an empowering environment, and programs and services that help families thrive.
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.
Offers numerous supports to all families, including peer to peer support and many workshops.
Services for children with disabilities by state.
American Association of Intellectual and Developmental Disabilities
HopeKids provides ongoing events, activities, and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We surround these remarkable children and their families with the message that hope is a powerful medicine.