Thank you for taking the time to find out why “Down For a Cure, Inc.” was founded. Our story is somewhat lengthy, but we’ve tried to give you the Cliff Note version of our journey thus far.
It began in September of 2010 in Midland, Texas. Our first son, Jackson Ray, was born and we were ecstatic to start our family. At our first newborn check, we were asked to come back to the pediatrician for more blood work. One of his numbers was high and although he was thriving and gaining weight like a healthy baby, they wanted to make sure everything was okay. It wasn’t. We did two sweat tests to confirm, once in Midland and then again at Dallas Children’s hospital. Jackson had Cystic Fibrosis and we had no idea what that meant. Neither of us had known we were carriers and there had been no history of CF in either of our families. We quickly learned what it meant to care for a child with Cystic Fibrosis, i.e., the multiple medicines, nebulizers, Vest treatments, germ precautions, long check-ups every three months and of course insurance. Fortunately, Jackson has been blessed with extremely good health so far and we pray every day that it continues. He turned 11 this past September and loves football, basketball, golf, swimming, playing with his brothers and friends and anything to do with animals. He’s kind and smart and loves Jesus. He doesn’t enjoy doing his treatments everyday (who would), but he doesn’t complain either. It’s become a norm in his young life.
Our second son, Brock, was born in 2012 and although we stressed and prayed a lot during this pregnancy, he is healthy as can be, and his brothers' biggest fan and supporter. He doesn’t complain about having to go to all the doctor’s appointments and can usually be found right next to his brothers as they’re doing Vest treatments.
Our journey got more complicated when our third son, Lincoln Jeremiah, was born in August of 2016, in Colorado. Born four weeks early with Trisomy 21 and several other complications, he was already fighting an uphill battle. His initial CF screening was negative and we breathed a sigh of relief. After all, he was dealing with enough already. However, after a 28 day stay in the NICU, a couple other emergency room visits and eventually another 7 week hospital stay due to pneumonia, a collapsed lung, staph infection in his blood, and still struggling to gain weight, we opted to test again for CF. The sweat test was positive and when the screening came back this second time, it showed the same mutations as Jackson…DF508 and a deletion of exon 4. Although an extremely rare dual diagnosis combination, since being diagnosed and starting the proper medications, Lincoln slowly began to thrive. Still having some issues, he did multiple swallow studies that showed he was aspirating all liquids. He had a feeding tube placed in July of 2018 and has since been doing amazingly well. Don’t misunderstand, he is an eating machine when it comes to solids, he simply couldn't drink anything by mouth. He has slowly improved on the swallowing and we're hoping to be completely off the feeding tube by 2022. He turned 5 in August and started kindergarten. He is a quick learner, can stack anything and everything, loves his brothers and his friends and has a smile that can literally turn your day around. I don't think anyone would argue that he has been the biggest inspiration to our family.
Over the first few years our family and friends always supported our fundraising efforts to help find a cure for CF, but having to spend months in and out of the hospital with Lincoln and witnessing other families having to juggle “life” with sick kids, we decided to make our previous visions a reality. Inspired by their resilience, in July of 2017, with the help of Uncle Jeff, we developed a non-profit called “Down For a Cure.” We want to be able to help families dealing with both Cystic Fibrosis and/or Down Syndrome in whatever way they need. We have been blessed with a village of family and friends that are able to help us when we need them and we understand that’s not always the case.
We are truly humbled by the outreach of love and support. Thank you for letting us share our story.
It began in September of 2010 in Midland, Texas. Our first son, Jackson Ray, was born and we were ecstatic to start our family. At our first newborn check, we were asked to come back to the pediatrician for more blood work. One of his numbers was high and although he was thriving and gaining weight like a healthy baby, they wanted to make sure everything was okay. It wasn’t. We did two sweat tests to confirm, once in Midland and then again at Dallas Children’s hospital. Jackson had Cystic Fibrosis and we had no idea what that meant. Neither of us had known we were carriers and there had been no history of CF in either of our families. We quickly learned what it meant to care for a child with Cystic Fibrosis, i.e., the multiple medicines, nebulizers, Vest treatments, germ precautions, long check-ups every three months and of course insurance. Fortunately, Jackson has been blessed with extremely good health so far and we pray every day that it continues. He turned 11 this past September and loves football, basketball, golf, swimming, playing with his brothers and friends and anything to do with animals. He’s kind and smart and loves Jesus. He doesn’t enjoy doing his treatments everyday (who would), but he doesn’t complain either. It’s become a norm in his young life.
Our second son, Brock, was born in 2012 and although we stressed and prayed a lot during this pregnancy, he is healthy as can be, and his brothers' biggest fan and supporter. He doesn’t complain about having to go to all the doctor’s appointments and can usually be found right next to his brothers as they’re doing Vest treatments.
Our journey got more complicated when our third son, Lincoln Jeremiah, was born in August of 2016, in Colorado. Born four weeks early with Trisomy 21 and several other complications, he was already fighting an uphill battle. His initial CF screening was negative and we breathed a sigh of relief. After all, he was dealing with enough already. However, after a 28 day stay in the NICU, a couple other emergency room visits and eventually another 7 week hospital stay due to pneumonia, a collapsed lung, staph infection in his blood, and still struggling to gain weight, we opted to test again for CF. The sweat test was positive and when the screening came back this second time, it showed the same mutations as Jackson…DF508 and a deletion of exon 4. Although an extremely rare dual diagnosis combination, since being diagnosed and starting the proper medications, Lincoln slowly began to thrive. Still having some issues, he did multiple swallow studies that showed he was aspirating all liquids. He had a feeding tube placed in July of 2018 and has since been doing amazingly well. Don’t misunderstand, he is an eating machine when it comes to solids, he simply couldn't drink anything by mouth. He has slowly improved on the swallowing and we're hoping to be completely off the feeding tube by 2022. He turned 5 in August and started kindergarten. He is a quick learner, can stack anything and everything, loves his brothers and his friends and has a smile that can literally turn your day around. I don't think anyone would argue that he has been the biggest inspiration to our family.
Over the first few years our family and friends always supported our fundraising efforts to help find a cure for CF, but having to spend months in and out of the hospital with Lincoln and witnessing other families having to juggle “life” with sick kids, we decided to make our previous visions a reality. Inspired by their resilience, in July of 2017, with the help of Uncle Jeff, we developed a non-profit called “Down For a Cure.” We want to be able to help families dealing with both Cystic Fibrosis and/or Down Syndrome in whatever way they need. We have been blessed with a village of family and friends that are able to help us when we need them and we understand that’s not always the case.
We are truly humbled by the outreach of love and support. Thank you for letting us share our story.