Exploring the challenging landscape of congenital diseases invariably leads us to remarkable stories of courage and resilience. One such narrative is the story of Brooks Markus, marking an intense battle with Congenital Central Hypoventilation Syndrome (CCHS), a rare and severe genetic disorder characterized by the failure of automatic control of breathing. His inspirational battle not only illuminates the struggles faced by those with CCHS but also shines a light on an innovative cause known as ‘Calves for a Cause’— an understated initiative championing the needs of individuals like Brooks.
“CCHS, characterized by a ‘silent’ yet relentless struggle, demands a newfound respect, evoking our common responsibility as society and industry to effect change. When will we genuinely prioritize genetic research and innovative therapies? The fight, embodied by individuals like young Brooks Markus, is happening every day.”
Born on October 28, 2019 into this challenging world with CCHS was Brooks Markus. Brooks is 1 of approximately 1,500 people globally who grapple with this formidable disorder. This distressing affliction perturbs the brain’s aptitude to smoothly handle autonomic functions, such as the essential task of breathing, and can even intrude upon other vital processes, such as sleeping. Markus’s journey has been one marked by challenges and triumphs. Yet, amidst the uncertainties, Brooks and his family have found great support from the church and dairy communities.
From a clinical standpoint, Congenital Central Hypoventilation Syndrome, or ‘Ondine’s Curse’, is a complex disease. Its sufferers, like Brooks, are unable to perceive and respond to decreased levels of oxygen or increased levels of carbon dioxide, particularly during sleep. This can lead to severe health implications including heart failure, lung damage, and neurological effects.
Brooks spent his first 120 days of life at the Children’s Hospital’s Neonatal Intensive Care Unit and Pediatric Critical Care Unit. Brooks Father Darryl Markus acknowledges it was a “blessing in disguise” that his family had just recently relocated to the Ingersoll region, where they can get to the hospital more quickly than where they previously resided. Markus grew up on the well-known Markvale Holsteins farm and acquired quota and a farm in the Belleville region before venturing out on his own. If the family had remained in that region, they would have had to drive several hours to the children’s hospital in Ottawa.
Darryl and wife Sarah have five additional children, all boys, and have never shared anything about their family on social media. But when news spread about Brooks in the hours after his birth, “we probably had almost 40 messages in the first two days asking how he was doing.” So they started posting on social media to keep their friends and family informed, many of whom worked in the dairy sector. Darryl tells how a snowball effect resulted in the inaugural Calves for a Cause sale, and now in its fourth year.
“The sole purpose of the sale is to give back to the London Children’s Hospital,” explains Darryl Markus, Brooks’ father and sale creator. “It’s our way of thanking you for the wonderful care Brooks gets there, as well as supporting other families who need care there. For us, the London Children’s Hospital is a second home; the incredible health care experts there treat Brooks and our family like family, and we hope that sale proceeds may assist every family experience the same love and care Brooks has.”
Calves for a Cause is a consignment sale, and dairy breeders can choose to provide either 100 per cent of the proceeds or a portion of the proceeds to the Foundation. All commissions earned are also donated to the Foundation. ‘Calves for a Cause’ has already made significant strides towards shedding light on and supporting children’s healthcare in the London region With an impressive tally of over $170,000 contributed thus far. The first Calves for a Cause was held virtually in 2021, followed by another virtual edition in 2022 as well as in-person consignment viewing was held. Last year it was held in conjunction with the Canadian Dairy Xpo in Stratford.
Now in its fourth year, the ‘Calves for a Cause’ initiative was held again as part of Canadian Dairy Xpo in the Cow Coliseum on April 3rd, featuring 40+ head of dairy calves from multiple breeds and then was followed by an embryo and semen auction ending on the 4th.
This year’s sale was extra special as Brooks, the driving motivation behind this great sale was able to take charge and lead some of the consignments himself on this special occasion.
Darryl Markus comments “We often get ask, why? Why we’re so passionate about Calves For A Cause. Of course, Brooks is a major part of our why but, it’s way deeper than that now. Yes our why has come from a life of tears, anxiety and pain I wouldn’t wish on my worst enemy but, there’s also the countless children and parents we’ve met along our journey. It’s the children we see heading into the oncology unit, it’s the little premie baby going by us in the halls with the transport team on its way to the incredible NICU staff. It’s the children who have been involved in a car accident and need the amazing PCCU staff just to keep them breathing. If you’ve walked through a Children’s hospital, you know exactly what we’re talking about, the experience is life-changing! Our why is making sure we can do our part to make the best of terrible situations for families like ours just trying to figure out what the next 15 minutes looks like much less the next day!”
“The support from the ag industry and our church community has be incredible,” Darryl remarked. “We’ve learned that you can’t take anything for granted and every day that Brooks is here is a gift.” Comments Brooks’ father Darryl Markus. “As a family, we’d like to say a huge thank everyone involved with the live part of the sale, consignors, buyers and the entire staff, we truly couldn’t do it without all of you!! Putting an event on like this is a lot of work but immensely gratifying when you see the excitement it brings people!”
