Kimberly Ruggiero

For those of you that don’t know, my Grandson was born with Cystic Fibrosis on November 1, 2013 (hard to believe he will be eight years old this year). He was born at 6:29 p.m. and appeared to be doing fine. We went home and let the new family try and get some rest. It was the devastating call at 6:00 a.m. the next morning where my daughter was discharging herself and heading to the CT Children’s Hospital. Little Brent was not able to hold any milk down and was continually spitting up. They did tests that day and determined his intestines were not right and would require surgery. On Sunday morning he underwent surgery for many hours to restructure his intestines and he had a colostomy. The cause, Cystic Fibrosis. We spent weeks in the hospital and were thrilled to finally go home. On January 30, 2014 he underwent a second major surgery to reverse the colostomy – hurray!

Over the next few years, outside of the many colds and viruses he has had, he had been relatively well outside of his normal CF care and being smaller and below the weight scales for his age. This had been, and continued to be, monitored closely.

Based on his weight being well below the charts, we unfortunately had to face the inevitable. In October 2018 our little guy had to go in for surgery and have a G-Tube (feeding tube) inserted. This nearly broke our hearts and was one of the hardest things for us all to go through.

With the COVID pandemic, 2020 and 2021 were very challenging years. Like many others, we opted to keep Brent inside to avoid any outside chance of obtaining the virus. This was very difficult for a seven / eight-year-old little boy and it was a long couple of years.  Everything was virtual, including school. In November 2020 we found ourselves back in the hospital for surgery to remove polyps in his upper nasal cavity as well as removal of his adenoids (symptoms of the disease). And then two weeks later we were back in the hospital as he had an intestinal blockage.

His routine care requires monthly blood tests and scans, visits to the Cystic Fibrosis center at the CT Children’s Hospital, multiple medications and enzymes prior to each feeding, multiple breathing treatments daily, including his vest he wears which assists in movement to break up any fluids forming in his lungs (known as High Frequency Chest Wall Oscillation), as well as his daily feeding tube.

In addition to his many medications and treatments, and in order to ensure he gets his nutrition, gains weight, and grows, he has prescription drinks. He must have four to five a day. These drinks are so enriched with nutrients, fat, and calories, that he won’t eat food. We still try to encourage him to eat food (even goodies) and are doing everything in our power to do so. We continue to push forward and do whatever we can within our power to help and watch him grow. He is such a joy and we are truly blessed to have him.

While there is no cure at this time, we know they get closer and closer every day! Trikafta, a medication slowing the progression of the disease and providing a better quality of life is appropriate for Brent's mutation and we are eagerly awaiting when he can take it.

We are working hard to raise awareness and are definitely trying to ensure that our little guy, as well as the thousands of others, have the chance to see many tomorrows!

We have participated in the Cystic Fibrosis walk for a many years now, and know we are really making a difference for so many, including our grandson. This is when we reach out to our family, friends, and loyal supporters to consider making a contribution to this wonderful Foundation. We certainly understand that it may not be possible for you to contribute, so please know that your thoughts and prayers are very much appreciated.

Your support means more than you know – with my sincere thanks!
Kim Ruggiero