Photo credit: KUSA-TV
Before, during, and after having a baby, time is spent stressing about getting all the things the baby will need, thinking about whether the nursery will be done on time, and lots of time is spent worrying whether the baby will be healthy or not. This worst fear of many moms and dads came true for one Colorado couple. Their son was diagnosed with cystic fibrosis after he was born. That’s when this family decided to take the opportunity to turn a negative situation into something positive. They are now taking it upon themselves to raise awareness and donations for research to help find a cure for cystic fibrosis.
The Shock of Diagnosis
Nicole and Jeremy Spooner were a typical American couple living the dream. A dream that became a nightmare after the birth of their son, Sutton. They knew something wasn’t right after he was born, and then doctors gave the diagnosis of cystic fibrosis. Now, this news would be scary for anyone to hear; however, in Nicole's case it was a bit more profound.
Nicole worked as a nurse at the time. She worked at the Children’s Hospital, taking care of children with cystic fibrosis. The knowledge she had about the condition and experience she had in seeing what it does - that is enough to make any mother panic. In an interview Nicole did with Channel 9 out of Colorado, she explains how it’s a case where “sometimes you know too much”. She goes on to explain how she has been involved with taking care of children who she has seen pass away from this disease. Now faced with the disorder hitting her own family, it was time to jump into action.
There is currently no cure for cystic fibrosis. Medical advances have come a long way since the condition’s discovery in 1938. Most children with mild mutations, what Sutton has, go on to live longer lives. Typically, cystic fibrosis is a multi-system disorder. There are so many mutations of this disorder that some patients might only be affected by single organ forms of the disease. Even though the Spooner family took comfort in the fact that they understand things could be worse for Sutton, they still felt they still needed to help raise awareness. They have started fundraisers in effort to help raise money for research for the condition and plan to continue to raise awareness.
Is Ignorance Bliss?
In this situation, the mother is a practicing nurse at a Children's Hospital. Her job is to take care of children with the same disease her son is now diagnosed with. She worked in an environment where she was directly involved with the negative impacts of this disease on children, even having to endure the death of these patients. Is it better to have the uncut and ugly truth or is ignorance really bliss in this situation? On one hand, she is equipped with knowledge that will be beneficial to her son’s care. On the other hand, she is aware of the fact that her son has a life-threatening disorder. People handle stress in different ways. Some people want to jump right in and learn everything there is to know when they are given a diagnosis. The internet is a great place to learn horrible information, but people do it anyway because some just need to know every single detail good bad or ugly. Other people want to know absolutely nothing, as little as possible. This mother didn't have a choice and that holds true for a lot of people working in the medical field. There are stories all the time of the oncologist who was diagnosed with cancer, the cardiac surgeon who needs a triple bypass, and the pediatric nurse whose child was diagnosed with a deadly disease. It is often that you hear about these people because of a story of positivity in the forms of fundraisers and good-Samaritan actions of hope. Maybe the knowledge they have about the condition is a positive thing; maybe ignorance isn’t bliss.
The Power of Parents
The Cystic Fibrosis Foundation was started in 1955. Not by a group of scientists or physicians, but by a group of concerned parents. At that time, there wasn't much information about the condition. These dedicated parents volunteered their time and energy to begin what would become an astronomical leader in the care of cystic fibrosis. It has grown into an organization that is nothing less than impressive. There are over 80 chapters of the Cystic Fibrosis Foundation located across the United States. They provide grants for research and promote around a hundred offices that specialize in the care of patients with cystic fibrosis.
Scientists at the foundation are the ones who discovered the gene responsible for the disorder in 1989. The foundation began with a group of determined parents who wanted nothing more than to save their children. The impact of the foundation on the goal towards a cure for this disease can be seen in the facts. The life expectancy has gone up in patients with cystic fibrosis. The foundation has been part of the evolution of new medications that help thin the usually thick mucus in a patient’s lungs. Ground breaking clinical trials that have led to numerous successful treatment options. It is quite impressive to visit the website of the foundation and look at the history. They have a timeline from the day the foundation was created up to present day. The information is incredible and it’s exciting because the goal of the foundation is to find a cure for the disease. With what they have been able to accomplish so far, it is a believable goal. To think that it all started with a loving group of parents devoted to their children's lives, it is a pretty amazing thing.
When life hands you lemons, you make lemonade, right? Most parents would agree that there’s nothing worse in the world than watching your child suffer. There are many parents out there that struggle when their child has a simple cold. The strength of parents who care for children with cystic fibrosis is nothing short of heroic and brave. For some people, it is instinctual to jump into action when faced with bad news. There is an immediate need to find a reason and purpose, a positive light in a dark situation. It is so helpful to other people who end up in the same situation. It is therapeutic to share stories and speak with others who have been in the same shoes. These are reasons why raising awareness about disorders like cystic fibrosis is so important.
The Spooner family plans to continue their efforts to raise awareness for cystic fibrosis. The money is donated to the Cystic Fibrosis Foundation in hopes to find a cure for this disease. Sutton is a happy and healthy four-year-old, but both mom and dad are committed to continuing the efforts to raise money. The more research that can be done on this disease the better a chance of finding a cure. The Cystic Fibrosis Foundations has events to raise money all over the country and you can visit their website to find more information: https://www.cff.org/.