Today marks the beginning of Feeding Tube Awareness Week , and it is an honour and a privilege to share Todd’s story and his words on what it means to live with a feeding tube and cystinosis. We are deeply thankful to be able to share Todd’s story and truly grateful that he was willing to entrust us with his words.
The Tube in My Flesh tells of Todd’s progression toward enteral feeding, presenting this decision not as a clinical milestone, but as a deeply lived experience shaped by loss of function, dignity, faith, and survival. As the oldest living Canadian with cystinosis, Todd offers powerful and valuable insight into the realities of tube feeding in adulthood and life with a rare disease.
Feeding Tube Awareness Week (FTAW) 2026 will be celebrated from 1–7 February 2026. FTAW raises awareness, shares information and resources, and provides support and connection, helping to unite the tube-feeding community worldwide.
#FeedingTubeAwarenessWeek #FTAW2026 #LifeWithATube #EnteralFeeding #TubeFed #RareDisease #Cystinosis #DisabilityAwareness #InvisibleDisability #ChronicIllness
