About Drew's Crew - Working for a Cure
Drew, now 18, struggled with delays, reflux, sensory issues/autism, and seizures all his life. Our family quickly became well versed in doctor and therapy appointments, sitting through IEPs, and the dreaded fight with insurance. Drew requires SEVEN prescriptions daily (several multiple times at day) and has a 3 step rescue plan as needed. He has only been able to handle half days at school for several years. He attends several hours of therapies each week. It's often hard to attend routine events as he tires easily or just gets overstimulated. In 2016, Drew's neurologist gave the go ahead for more genetic testing. After the long process of requesting insurance to cover it, Drew had whole exome sequencing. A few months later, we had an answer. Drew has a mutation on Chromosome 15 called CHD2. It wasn't passed down, it was just a mess up as all the cells and DNA were forming. He was the 1st one our neurologist at Children's Colorado know of. There was only ONE scientific paper available. It was from the researchers that discovered it and it only listed 32 known patients diagnosed with it. We soon found a new Facebook group for family members/caregivers of loved ones with CHD2. Any info we learned was from others living similar lives. Then in 2020, two mothers formed Coalition to Cure CHD2. Since then, families, doctors, and researchers are making strides in understanding CHD2 better and working for improved treatments. This past summer, I (Leah) was able to attend the Family Conference in Colorado. It rejuvenated my desire to find a cure for our son. I even threw myself WAY out of my comfort zone. I am now sitting on the fundraising board for Coalition to Cure CHD2. Do I like asking for money? NO, but will I stop reaching out...NO. As of this morning (2/2/26) 556 people worldwide are registered with Coalition to Cure CHD2 (CCC). As genetic testing becomes more widely routine and as we can work to reach non English speaking families, those numbers are expected to rise. CCC is working to start a Natural Study later this year or next year all while still hosting yearly scientific conferences and family conferences every other year. This does not include all the other ins and outs of running a non-profit. Please consider giving anything you can. A little can go a long way. Drew and the 555 others deserve better treatments and more hope.
