Summers story is known by some of our friends and family but not by all. Here is how it all started for us. Summer Knight was born via c-section 2019 just 11 months after her brother Cash. I was holding her in the hospital bed and like a wave of anxiety I looked down and she had stopped breathing her lips a faint blue, I ran down the Mercy hospital hall screaming for help. It almost felt like I dreamt that moment instead of living it because it happened and ended so quickly. Being reassured it must simply be some reflux they proceeded to discharge us to go home. I was trying to convince myself that lack of sleep had me thinking it was more than regular mom worry. I don't think she or I slept the first week of her life, I became quite literally obsessed with watching her breathe. Anytime we put her in a car seat she would turn blue and I would have to physically remove her. Those days were some of the scariest days of my life. Primary care doctor suspected reflux at her 1 week follow up but that wasn't an answer I was willing to accept. I insisted after another episode on the way home to bring Summer into the Emergency room at MMC. Teams of doctors chatted and reviewed what was going on and came up with ....well NOTHING. They suggested that instead of intervening in an episode with the attempt to help her, I should simply stand by and let her "go". My maternal instict would quite literally not allow me to refrain from intervening, so I prayed . I prayed that if there WAS something happening to my baby that the answer would be revealed. Sitting there holding my frail infant the door slowly opened and a doctor walked in as did many before him. I didn't even make eye contact because I just felt as though no one in this world could see what I could. Unbenonced to me this doctor had something very specific to tell both Summer and I. Summer had Cystic Fibrosis it was identified on her heel prick of her newborn screening. I remember the doctor sort of startled at my lack of acknowledgment for the news he delivered. Waiting for acknowledgment from me the doctor quickly realized that both Summer and I were in distress. I explained she was having episodes of airwayone problems that I couldn't physically take my eyes off of her. Well this doctor was more specifically a Pulmonologist within minutes he identified an airway condition. Immediately transferring us to the Barbara Bush Wing. The terms bronchomalacia and laryngomalacia were used to identify her episodes of lack of oxygen. Summer would now be required to stay on an oxygen tank 24/7 and a heart rate monitor. Weekly doctors appointments, regular child visits inundated our lives. Summer quickly being attached to a number of medical devices until she "potentially grew out of her symptoms" seemed like both a blessing and another debilitating anxiety. Summers brother was just 11 months old and keeping him and the other two children away from all of her machines seemed frightfully unattainable. We spent months that summer essentially quarantined attached to a 10ft oxygen tank at a camp on Sebago, while building our beautiful new home. The days were long for all of us and one of the biggest struggles at that time being we couldn't use the stove or grill for food because oxygen tank couldn't be near propane for fear of causing a fire. I learned ALOT about not only her breathing struggles but Cystic fibrosis implementing daily treatments of physical therapy and medications around the clock that will remain for the rest of her life.
Yet again her strength did in fact achieve not needing the oxygen after nearly a year. She has since lived through a covid pandemic and personally survived COVID-19. As many of you pray for the world to "go back to normal" Summer and I pray you continue to stay home when sick, wash your hands and understand that although she has made it this amazingly far in over two short years of life, every illness can take years off of her quality of life. Summer still struggles to gain weight and that is a consequence for being the youngest in a household with four busy kids. I am grateful everyday for Summers shining smile and sass through it all. This is just the beginning of her journey for our entire family. With your generous help and support everyday the future looks a little brighter.
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support Summer!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!