Life Jacket for CF Patient Campaign

My nephew, Kayden, is 17 years old. 

He has cystic fibrosis. (CF)

Unlike most CF patients, he was unfortunately only diagnosed with CF at the age of 12 due to gross negligence by the treating doctors at the time.

Three and a half years ago his parents split. They moved across town to be closer to family for support.

He found new friends and built amazing relationships with his cousins. He joined a baseball team, and he absolutely LOVES it! 

These are things that make him feel 'normal'. Things he wishes to do more of and without worry. 

What he most hates about having CF, is that kids tease him when he coughs. They mock him about his stature, his small thin frame. 

His mother, my sister, feels completely helpless.

She can only but sit there and watch this thing happens inside of him. She can't stop the coughing, or aching, or pain throughout his body, or the mean kids, or the constant trips to the hospitals, or the IV. 

She can only hold him close and give him all the love she has. 

She can't take it away. 

There is no cure for CF and with early diagnosis and treatment, the average lifespan is around 40. 

Except he didn't get the benefits of the early diagnosis, remember. He doesn't have the average lifespan of a CF patient. He is not an average CF patient.

Sadly for this kid, who has big dreams, a passion for formula 1 and is an INCREDIBLY talented artist, is expected to maybe make it to 28. 

Cystic fibrosis is a genetic condition in which the body produces excess mucus. 

He's unable to gain weight adequately, and any physical activity is a strain on his already tired lungs and heart. The mucus is thick and impenetrable. 

Cystic Fibrosis is NOT contagious. (Unless you have CF, then your bugs and his bugs will want to get together and have a party at each other homes and not clean up the mess they make in the process. A very dangerous game…)

He doesn’t ask for much, as he is very aware of the financial burden and struggle his mom has to go through as a single mom with little to no maintenance being paid. He has little to no contact with his father and does his daily chores at home. He's a good kid. 

With quarterly 10 - 15 day long IV treatments, he still faces his current daily treatment plan which includes but is not limited to the following:

Daily physio. 

Nebulising 3x daily with 4 different antibiotic nebs. 

Zithromax Antibiotics 3 times a week. 

Daily supplements. 

Ensure shake 4 times a day. 

Creon tablets for protein absorption before all meals and snacks. 

High fat meals. 

They travel roughly 40 minutes as early as they can get going, to get to his treatment at the pulmonary ward at Charlotte Maxeke hospital. A range of doctors see him as they rotate, but his most consistent doctors are Dr Price and Dr Kahn. 

He is required to go in every 2 months, but they collect his medication every month. This whole process can take anything from half an hour to 5 hours, sometimes it can take up an entire day. 

Ultimately, acquiring The High Frequency Chest Wall Oscillation Vest can significantly improve his health and quality of life. 

The vest is designed to appropriately physio the upper abdomen and chest cavity in order to loosen and expel the mucus. This makes breathing and general life easier for him.

Ideally,  they should fly to the United States to have the vest fitted and full consultation and explanation given. Every parent would want opportunity to do everything possible to help their slowly dying child.