Baring My Rare: Thomas Cheesman’s Journey of Resilience and Advocacy

Discover the inspiring story of Thomas Cheesman. He lives with Hajdu-Cheney Syndrome, an ultra-rare genetic disorder. Yet, he thrives as a family man, former chef, and dedicated advocate. Moreover, Thomas champions disability rights in Alberta. Additionally, he leads efforts to rebuild Margaret Edgson Manor after a devastating fire. This narrative highlights strength amid challenges.

Roots in Alberta: Heritage and Early Life

Thomas originates from Alberta’s expansive foothills between 1980 and 1990. Later, he settled in the prairies. Specifically, he has resided in Grande Prairie since 1999. This region features a resource-driven economy. Additionally, it boasts tight-knit communities. Born around 1981, Thomas’s paternal heritage links to the Netherlands. His grandparents, Suzan and Rienk Lakeman, emigrated there. They settled in Calgary during the 1970s. Rienk pursued an international career. This involved extensive travels. Rienk’s potential adoption adds mystery to the family tree. Meanwhile, Suzan’s maiden name, Verboom, connects to siblings in Ter Aar, Netherlands. This reflects a lineage of post-war European resilience. On the maternal side, the Dochertys provide a steadfast Scottish foundation. In-laws from the Rycroft family contribute an island flair. Their ancestors migrated from Hawaii to Canada. Notably, they named the town of Rycroft in Alberta. Thomas’s early years involved frequent moves. For instance, he lived in Edmonton in the early 1990s. This was due tohis mother’s remarriage and brief separation. Short stints occurred in Spirit River, LaGlace, TeePee Creek, and TeePee Creek again . Additionally, he stayed on a large hoarder-cluttered farm near Little Smokey from 1997 to 1999. These experiences built resilience and adaptability. Humorously, one might link this to his genetic predisposition from Hajdu-Cheney Syndrome. Doctors diagnosed this in childhood. The ultra-rare disorder stems from a NOTCH2 gene mutation. It causes progressive bone breakdown and severe osteoporosis. Moreover, it leads to distinctive features like stout fingertips and joint laxity. However, Thomas confronts this with Dutch pragmatism and Canadian grit. He uses accessible AI tools for research. Specifically, he explores treatments such as bisphosphonates and Romosozumab. Thus, he turns vulnerability into empowerment.

Family Bonds: Love, Laughter, and Adventures

At Thomas’s core lies his devoted family. He anchors it with his wife, Melanie. They rekindled romance after an eight-year hiatus. This led to 13 years of partnership. Their life brims with love and joyful chaos. They raise three extraordinary children. Patience, now 12, leads as the “miracle” big sister. She is quirky and helpful. Often, she assists with heavy tasks. Playfully, family anecdotes liken her to a toe-biting bug. Daniel, the thoughtful middle child, matures in spurts. He evolved from energetic toddler scooting. Now, he supports his siblings reliably. Faith, the youngest, draws her name from a prophetic dream. She embodies a wild, stubborn spirit. Her Scottish roots shine through. She remains independent yet particular. Occasionally, she spars with Thomas over chores. Nonetheless, she brings boundless joy. Family adventures weave vibrant threads. For example, they took epic road trips in their red Pontiac G5. These spanned Vancouver, Calgary, and Grande Prairie. Whimsical pretend fishing occurred at Grovedale Pond and Moonshine Lake. Imaginations flowed freely. However, quieter trials contrast these. They mourned their beloved Pitbull cross, Mary. She was Melanie’s steadfast companion. Thomas reflects on time’s swift passage with young children. He harbors regret for not starting sooner. A light roast quips that with three vibrant offspring and joint laxity, he masters “flexible” parenting. He bends backward to spin enchanting bedtime tales. These feature unicorns, rainbows, leprechauns, and funky beavers. Even amid COVID-19 challenges on education and growth, Thomas stays grateful. He cherishes his kids as luminous souls. They make hardships worthwhile.

Culinary Career: From Kitchen to Community

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thomas built a robust culinary career. He ignited his passion at age 21 in 2002. He joined The Keg in Grande Prairie as a line cook and prep cook. Over 12 years, he mastered kitchen arts. He rose to Assistant Kitchen Manager. Additionally, he led during his boss’s medical emergency. By 2013, he advanced to Head Chef at Ric’s Grill. He navigated launching a new restaurant. Later, it rebranded as Township71 in 2014. This synced with personal milestones. For instance, he bought a home in Scenic Ridge. Moreover, he welcomed his first child. However, it shuttered nine months later. Alberta’s oil economy downturn caused this. Undeterred, Thomas served as Head Chef at Majors from 2015 to 2019. His Hajdu-Cheney Syndrome advanced. It imposed physical limits and fracture risks. Thus, he shifted to Alberta’s AISH disability benefits. Beyond stoves, Thomas commits to community. He volunteers with Grande Prairie Residential Society. There, he designed their website. Additionally, he aids committees. He shares historical narratives from the 1980s to 2000s. These involve volunteers at Margaret Edgson Manor. They include therapists and nurses supporting disabilities. His timeline features early roles. For example, he worked for Valleyview Town in 2000. Recently, he explores home-based ventures via LinkedIn. He repurposes Microsoft tools for media and training. A gentle roast notes he traded steaks for coding. His bones may “dissolve.” Yet, his work ethic endures firmly.

Advocacy Today: Fighting for Rare Diseases and Rebuilding Lives

His online presence shines on X (@TCheesy_). He shares family vignettes. For example, crafting “Feaste-a-berries” with kids using MrBeast chocolate. Additionally, he discusses Bitcoin for financial security. He underscores systemic change. As an AI tools teacher, Thomas equips patients. They navigate medical complexities. He fosters patient-powered research. This combats rare disease isolation. For deeper immersion, explore bareyourrare.com’s About Me page. There, he shares his narrative. It ignites collaboration and hope. Wryly, with such rarity, Thomas is a limited-edition human. He boasts tenacity and durability. Moreover, he lobbies for “patches” to flawed systems.

References

 

• • People with disabilities ask feds to raise benefit amount | National Post – https://nationalpost.com/news/canada/disabilities-feds-raise-benefit-amount

• • AISH recipients form grassroots group to raise awareness, dispel … – https://www.cbc.ca/news/canada/calgary/aish-recipients-arise-group-1.6949884

• • GPFD responds to overnight structure fire at Margaret Edgson Manor – https://cityofgp.com/culture-community/news-events/news/fire-department/gpfd-responds-overnight-structure-fire-margaret

• • Accessible housing hard to find for Grande Prairie residents … – CBC – https://www.cbc.ca/news/canada/edmonton/housing-grande-prairie-alberta-apartment-fire-1.7588901

• • Margaret Edgson Manor Fire – Grande Prairie Residential Society – https://gpresidentialsociety.com/margaret-edgson-manor-fire/

• • [post:16] X Post by Thomas Cheesman on Hajdu-Cheney Syndrome – https://x.com/TCheesy_/status/1871772220592472123