The Deschenes have been involved with Operation House Call for a little over a year. They have four kids ranging in age from 6-12 years old, with three accessing services through an IEP.
Their youngest, Desmond, is diagnosed with a high degree of medical complexity with a rare genetic mutation TUBB2B causing multiple brain malformations, cerebral palsy, seizure disorder, and Cerebral Visual Impairment (CVI), along with a need for many medications, some of which have their own side effects.
While Desmond is non-verbal, he communicates a tremendous amount through his eyes, humming noises, and smiling. The family travels with an “All About Me” book to share with medical providers, caregivers, and teachers. Desmond loves bubbles, music, hand-under-hand activities, being talked to before being touched, and swimming.
The Deschenes prioritize making family memories – even though that sometimes means cancelling or rescheduling plans. This past summer, they rented an RV and drove to Niagara Falls. Through the Make-A-Wish Foundation, Desmond and his family were able to swim with one of his favorite animals, dolphins!
What the Deschenes family find most important to share with medical and allied health professionals through OHC is that providers need to see the person before the diagnoses. In the words of mom, Samantha, “He’s our 6-year-old boy first and foremost – please make sure the language in the chart and the treatment options reflect that.”
We are so thankful for the Deschenes family sharing their lives with OHC students. They, and all our host families, share lessons that cannot be learned from a textbook.
Are you interested in hosting? We are looking for families who live within 30 minutes of Boston and Worcester. Please reach out to Ashley Waring, OHC Family Engagement Director, at awaring@arcmass.org.
