How Family Can Be a Powerful Support System for Those with Cystic Fibrosis

Family can be a powerful support system. People are naturally community-driven beings who are healthiest and happiest when belonging to something greater. It's the reason that people will make great sacrifices for the people they love. Family can provide the pillar for emotional support through tough times. It can really be a foundation for inspiring survival and inner strength in a person suffering from a disease.

A tale of two brothers who have cystic fibrosis

Here’s an inspiring story of two brothers who are living with cystic fibrosis. Children with cystic fibrosis have been through much tougher times than many adults. It's heartbreaking to see children have such little opportunity to enjoy life when suffering so much from a disease they don't deserve.

But with family comes inner strength. These two brothers keep each other strong despite their misfortune. Michael and Dylan Defalco are brothers who were both born with cystic fibrosis. Michael is 10, and Dylan is 8 - both of them are so mature for their age as they have both endured such hardship from infancy. Every day, each breath is a battle won because cystic fibrosis can be so terribly hard on a person's lungs. Michael describes his disease as "glue" that makes it hard for his lungs to expand while breathing.

How does cystic fibrosis affect a child's life?

What happens in cystic fibrosis is that the body has a mutated chloride channel responsible for resorbing water when you sweat and excreting water to produce mucus in the lungs. The result is that people with cystic fibrosis become very dehydrated if they sweat. Their lungs also end up with an extremely thick secretion that makes it very hard to breathe. The mucus is problematic, making cystic fibrosis sufferers prone to infection and permanent scarring.

Besides the lungs and sweat glands, the malfunctioning chloride channel is also involved in pancreatic function in the gastrointestinal system. Normally, this channel helps liquify the enzymes produced by the pancreas that are released into the small intestine to break down foods. In cystic fibrosis, the malfunctioning chloride channel is unable to produce a watery solution for these enzymes and thus, pancreatic enzymes are blocked from ever reaching the gut. This is why people suffering from cystic fibrosis also have issues with digestion and malnutrition.

For children, cystic fibrosis can mean a very difficult life. From an early age, as young as infancy, their poor lung function means they are incredibly susceptible to infections. These infections can often land these poor kids in the hospital with a rampant pneumonia. Frequent infections also makes the risk for antibiotic-resistance higher, which means treatment can get very complicated. Having a hard time breathing can also make it hard for kids to run around and play with their peers. This can really impact their social life at school and in their neighborhood. Malnutrition is also a common problem for kids with cystic fibrosis. Because their digestive enzymes are blocked in the pancreas, they might be absorbing their food suboptimally. Many kids with cystic fibrosis are therefore smaller in size for their age group.

What Michael and Dylan have to go through

There are so many things that can go wrong when you have cystic fibrosis, and life is by no means easy. Luckily for Michael and Dylan, they have each other to lean on during tough times. The two boys do many hours of therapy for breathing every day, and they take dozens of medications to help them digest their food. Their mother believes that over the course of their lifetimes, the two boys have taken over a quarter million pills to maintain their digestion, and completed over 13,000 hours of respiratory therapy. That's a lot of medication and therapies for boys that are still in grade school!

They are determined to live life to the fullest

Despite the hardship they face every day, the two brothers refuse to let their disease slow them down. Dylan and Michael both believe that they can achieve anything despite their disease. Both boys are extremely active. Michael is an avid athlete who loves soccer and basketball. He is on a travel soccer team and also participates in a basketball team at the YMCA. Dylan is also an athlete, competing in boy's gymnastics. Both these boys are wonderfully talented and love their activities despite their disease. If you saw Michael on the soccer field or Dylan doing a tumbling routine on the floor - you would never think they had such a serious disease.

The two boys love to help others, too. Currently, they help spread awareness of cystic fibrosis by raising money. In honor of these inspiring brothers, the Huntington Estates Swim Team held an annual competition to directly benefit the Cystic Fibrosis Foundation.

The family has always been close and supported one another, dedicating their efforts to help cystic fibrosis research

This close-knit family seems pretty unstoppable in the face of this serious disease. Since being diagnosed, the entire family has stuck together and dedicated their time to raising money and advocating for cystic fibrosis research. Their mother hopes that their efforts can help find a cure for this lifelong disease. The family feels that they've seen science make tremendous leaps in improving treatments for cystic fibrosis, which helps motivate them to keep pushing on for a cure. They're happy to say that they feel extremely supported by their community too.

For the DeFalco family, their bond is so strong that even in the face of a terrible disease, they have been able to turn circumstances around to achieve great things within their community. Not only are they doing so much good for the world around them, but they are enjoying life too!

Family support can help you, too

Do you suffer from a chronic illness? Remember that we can find strength from the support of others. Whether it's a loved one who shares genes with you or not, a family doesn't always have to be a blood relative. We can draw strength from the people we care about and from a sense of community. If you suffer from a chronic disease, reach out to those around you. You might be surprised by how much healing can happen beyond the medicines and therapies a doctor prescribes. There is much strength in community and support from people around you. So what does family mean to you?

References

https://www.nctv17.com/news/young-brothers-living-with-cystic-fibrosis/