Rita K Moore

It  has been a while since I last wrote to you about our grandson Drew.  You may recall that he was born 14 years ago and diagnosed with cystic fibrosis.  Those early days were hectic.  He was in the hospital for a number of weeks while his parents dealt with the news and the change it meant to their lives.  At the same time, they were dealing with 20-month-old Ella and Drew’s twin sister Lily.  With the help (and prayers) of family and friends, things gradually fell into a routine.  There were numerous hospitalizations and clinic visits, but Drew was mostly stable and developed normally.  His weight and height were on the low side, but he was a happy little boy. 

The Cystic Fibrosis Foundation invested money in research and development of drugs and treatments.  In time a drug became available to treat (not cure) about 4% of CF patients who had a specific mutation.  Drew was not one of them.  Research continued and another drug and then a 3rd drug became available.  It was not until the 4th drug, Trikafta, was developed and approved by the FDA that Drew finally had an effective treatment.  This ‘miracle’ drug was effective in about 90% of patients, which means there are still 10% of CF patients in the USA with no effective treatment.  We want to see CF stand for Cure Found, for all people with cystic fibrosis.  Much research and effort is going toward this goal, and we could use your support in this endeavor.

How is Drew now, as a typical 14-year-old who will be entering high school next fall?  He has added inches to his height and is now taller than I am.  His weight is still on the low side, but his appetite is huge.  In his 2 ½ days here he ate a giant box of Rice Krispies, as a snack!  He plays basketball and swims in their pool when it is warm enough.  He plays computer games online (which I don’t understand) and is an excellent student.  He no longer must receive percussion treatments with a vest, take multiple inhalers or meds.  The one thing he must take is pancreatic enzymes with his meals, and that is expected for the foreseeable future. So far, after almost 5 years on Trikafta, he had not had any negative side effects.  We pray that this will continue, as others have had some side effects that required them to discontinue the drug.

While we are blessed that Drew is doing so well, we know of others who are not.  Our family remembers what it was like to not have an effective treatment. We continue to raise money for the Cystic Fibrosis Foundation to continue the research into finding treatments and a cure for this life-threatening disease.  Please support me in my efforts to allow the CFF to continue their work.  Their work has helped my grandson to become a healthy and delightful young man. On May 4 I will be part of the Great Strides in New London, CT, and any contribution you can make will be greatly appreciated.

You can make a donation on my fundraising page at http://fightcf.cff.org/goto/RitaKMoore2024

If you would prefer to make a donation via check, please make the check out to “Cystic Fibrosis Foundation”.