My Great Strides Story
King, Always Smiling
King and his sister, Emma Virginia
From my heart to yours,
King is living a productive life, full of the things 6-year-old little boys dream of: board games, his dog - Spot, play dates, repeated games of Uno, jars of Nutella, superheroes, soccer balls, Minecraft, Taylor Swift ;), dancing in the kitchen, lots of potty talk, cuddles with his sister Emma Virginia, and KINDERGARTEN.
King is also living a productive life full of the things 6-year-old little boys don't often dream of: 46 pills a day, 3 inhaled medications, hours of respiratory therapy a day, changing his own feeding tube!!, nightly tube feedings hooked up to a machine that runs for 8 hours, daily tube feedings at snack time, and the knowledge that he must do all these things to stay well.
Continued support of the Cystic Fibrosis Foundation is vital to King living a life full of everyday dreams.
We want to expedite the research and development that will, one day, allow King to breathe easier and stop the devastation to his lungs.
Please know that your donations go straight to the heart of the matter. CFF has a strong record of investing raised dollars back into research which has created a robust drug development pipeline including drugs in these areas: anti-infective, anti-inflammatory, nutritional/GI, mucociliary clearance, many of which King takes on a daily basis. They are literally sustaining his life by clearing his lungs and allowing him to digest and absorb nutrients.
Perhaps most significant this year are the more recent breakthroughs in restoring CFTR function! CFTR is where salt and water are maintained at the cellular level and where the problem begins for people with CF. Since 2012, the CF Foundation has seen three new therapies become approved, all that address the underlying cause of cystic
fibrosis. These drugs literally go to the root of the cause of CF at the cellular level and correct the issue. These drugs are not a cure, but they help stop the disease in its tracks. A percentage of the CF population is already benefiting from these therapies, but King's CF mutations (DF508 and W1282X) are more difficult to correct. While these three therapies do not directly affect King, they open exciting new doors to research and development of new therapies that may lead to a cure for all people living with CF, including King.
We are hopeful that one of the drugs to restore CFTR function currently in the drug development pipeline will be available to King in the next 3 years! We dream of the day that we can put a pill in his hand that will actually correct the mutations at the cellular level. Take amoment to dream with us.
Imagine the wrinkles of his hand cradling the pill that will change his life.
Believe with us that the weeks to follow will be full of deep breaths and fewer lung infections.
We want you to know that we wouldn't change a hair on King's head. We just want to give him relief from this disease and more tomorrows with his sister, Emma Virginia. The Cystic Fibrosis Foundation continues to advance in more holistic care and advocacy as they work alongside us to ensure affordable, adequate, accessible health care. We are grateful for the focus on patients so that they can thrive each and every day. We want King to live a full and happy life now and not a second later. After all, we have this one life, right?
Our team, Kenneth King’s Believers, will take part in the 30th Anniversary of Great Strides in Chattanooga at Baylor School on Sunday, April 29th. There are many ways in which you can support our efforts! We would love for you to join our team physically or VIRTUALLY. Our goal is to raise $30,000 as a team! Donations are invested wisely to go toward patient assistance, patient care, and research.
Money buys science and science saves lives.