Support for Samuel's Journey

Two years ago, dear friends of ours began a journey that none of us could have anticipated. Their oldest son Samuel, who was six years old at the time, began slowly losing his previously-held abilities in speech, motility, cognition, and socialization. This regression continued until Samuel’s average functioning became like that of a one-year-old (in a now eight-year-old’s body). While navigating these losses, plus juggling work and two younger sons at home, Samuel’s parents prayed and searched out answers from specialists across the nation.

Recently, Samuel was finally diagnosed with a rare condition called Autistic Catatonia. While the outcome for treatment is uncertain, Samuel’s parents are dedicated to pursuing fullness of life for Samuel through every avenue. The costs associated with Samuel’s upcoming specialized therapy will be significant. All funds raised through this GoFundMe will go straight to Samuel’s parents and will help cover the costs of transportation, lodging, food, and loss of income for the next foreseeable future in Samuel’s treatment. Our community has had a front row seat to the faith, strength, and grace that Samuel’s parents have displayed in the midst of their questions, grief, and weakness. Please join with us in giving what you are able to help fund their upcoming journey.

For more details about Samuel and his treatment, please read the following excerpt from his parents, Trenton & Rachel Penner:

Samuel is a kind, sensitive, and happy 8 year old who has been diagnosed with a rare condition called Autistic Catatonia. Two years ago Samuel went through a severe cognitive-social regression, of unknown cause. He was an intelligent and sociable 6 year old, but became like a 1 year old. He no longer engages in any conversation, can follow only very simple instructions, and does only the most basic self-care. Though he lost so much ability, he’s still happy and full of energy. 

In the past, Samuel was fascinated with animal facts, demonstrated his imaginative abilities through art and song, and showed kindness to everyone. He dreamt of growing up and having different hero-type jobs related to helping people or animals. 

Samuel currently spends a lot of time fascinated with simple, kid-friendly puzzles, galavanting outside in his fantastical imagination, devouring picture books, and jamming out to music beats. Even though Samuel is quite withdrawn, he loves hanging out around his friends and family, especially in nature. 

Samuel is supervised as though he were a toddler, both to keep him safe and so his basic needs are met. Because of his condition, Samuel has occasional, week-long episodes of “excitatory catatonia” where he barely sleeps, has an elevated heart-rate, struggles to eat, has panic attacks, manic behavior, and struggles to rest and be at peace in general. Life can be intense!

Thankfully, Samuel’s Dad is self-employed which allows him the flexibility necessary to help Samuel’s mom with caring for Samuel and his two younger brothers. Samuel’s brothers are currently 5 and 2 years old. 

Samuel recently passed through the medical and legal steps necessary to be approved for a specialized therapy at Vanderbilt University Hospital in Nashville, Tennessee that is geared for people like Samuel. The therapy will begin Monday April 14, 2025 and happen twice a week, for the foreseeable future. The therapy may continue for many weeks, months, or even longer and will taper to less frequent therapy sessions over time, depending how Samuel responds to the therapy. Eventually he may only need occasional, or as-needed, therapy sessions. The hope and prayer is that this therapy will help Samuel to communicate with family and friends again, express his unique and amazing personality, be more independent, and have relief from many of the negative things he experiences, such as panic attacks, insomnia, unawareness of danger, etc. It is possible Samuel won’t respond to the therapy. If after enough sessions it is considered unsuccessful, Samuel will stop receiving therapy. 

Gratefully, this therapy is covered by Samuel’s insurance. However, Nashville is 3.5 hours away from where Samuel lives, so traveling to Nashville, twice a week, for weeks or months, will easily become a daunting burden for the family. Samuel’s Dad will work even less than usual, plus there will be the increased living expenses from constant traveling. Donations received will help cover the costs of travel and support Samuel and his family while Samuel’s Dad has a reduced work schedule.