Tag: Cystic Fibrosis

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An Urgent Plea for Little Jordan: Facing Two Life-Altering Diagnoses

Jordan Fundraiser

Jordan (4 y/o) is a beloved foster child who has been with his primary caregiver since he was a baby of six and a half months. Throughout his young life, Jordan has been plagued by illness, leading to more than 14 hospitalizations for issues concerning his lungs and stomach. His foster family has always known that something was seriously wrong, and earlier this year, their fears were confirmed with not one, but two life-altering diagnoses.

In March, the family learned Jordan has Arnold Chiari Malformation, a condition where brain tissue extends into the spinal canal. Then, in June, they received the devastating news that he also has Cystic Fibrosis (CF). This is a lot for any family to process, especially as they navigated a regimen of extensive medication and preparation for Jordan to undergo his first major surgery – a crucial brain operation on the 12th of September 2025.

The Overwhelming Cost of Care

While Jordan is surrounded by a caring foster/adopting family, the financial burden of his ongoing medical needs is overwhelming. His foster parent does have medical aid, but it does not cover all the bills, and the family’s savings are completely depleted.

They are currently blessed to receive some necessary medications, like Creon, from the Johannesburg Clinic, but the most critical financial hurdle is the cost of medication for his Cystic Fibrosis. The life-saving drug Trikafta, cost R33,333 per month, which is not covered as a chronic medication by medical aid. This is simply unattainable.

As it stands, the foster parent pays all doctors’ bills and other incidental costs in cash, highlighting the family’s current struggle to provide everything Jordan needs.

How You Can Help

Little Jordan is a lovely boy whose family is taking excellent care of him, but they cannot do this alone. They need immediate financial assistance to cover the soaring costs of his medications, treatment, and long-term care.

If Jordan’s story has touched your heart, please consider making a donation today. Every donation, no matter the size, will directly support his fight against these two serious conditions, offering him the chance for a healthier, more stable future. Each contribution moves this loving family closer to securing the funds needed for his life-saving medication. 

We have also launched a heartfelt bracelet project to help raise funds for his ongoing medical expenses to further support his journey. 

Make a Donation
Account Holder: Arms of Mercy NPC
Bank: Standard Bank
Account Type: Cheque Account
Account Number: 10114699702
Branch Code: 051001
Swift Code: SBZA ZA JJ
REF: JORDAN

Alternatively, make a donation online with Payfast.

Hope for Jordan Charm Bracelet Arms of Mercy NPC
Shop Hope for Jordan Charm Bracelet

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What is Cystic Fibrosis?

Cystic Fibrosis

Cystic Fibrosis (CF) is an inherited life-threatening disorder that damages the lungs. It is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. It also causes severe damage to the digestive system and other organs in the body. CF hinders the release of digestive enzymes from the pancreas, which triggers malnutrition and causes lung disease that is eventually fatal and produces high levels of salt in sweat that can be life-threatening.

CF is characterized by abnormalities affecting certain glands (exocrine) of the body, especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs) or externally (e.g., sweat glands). In CF, these secretions become abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection.

Cystic Fibrosis
Figure A shows the organs that cystic fibrosis can affect. Figure B shows a cross-section of a normal airway. Figure C shows an airway with cystic fibrosis. The widened airway is blocked by thick, sticky mucus that contains blood and bacteria. Source: National Heart Lung and Blood Institute (NIH).

Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts and passageways. See how the lungs work normally and how cystic fibrosis can affect the lungs over time in this video by the Cystic Fibrosis Foundation.

CF is a complex disease. The types of symptoms and the severity can differ widely from one person to the other. Many different factors can affect a person’s health and the course the disease runs, including the person`s age at the time of diagnosis. While the majority of people are diagnosed with CF by the age of 2, some are diagnosed as adults.

Symptoms of Cystic fibrosis can include the following:

  • Persistent coughing, at times with phlegm
  • Frequent lung infections including pneumonia or bronchitis
  • Shortness of breath / Wheezing 
  • Chronic sinus infections
  • Nasal polyps
  • Very salty-tasting skin
  • Poor growth or weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Clubbing or enlargement of the fingertips and toes
  • Rectal prolapse
  • Male infertility

The disorder was first recognized in as a specific disease by Dorothy Andersen in 1938, with descriptions that fit the condition occurring at least as far back as 1595. The name “cystic fibrosis” refers to the characteristic fibrosis and cysts that form within the pancreas.

Although technically a rare disease, CF is ranked as one of the most widespread life-shortening genetic diseases. It is most common among nations in the Western world, and occurs predominantly among Caucasians – about one in 40 carry the so-called F508del mutation. Two copies of the mutation, one inherited from the mother and the other from the father, cause the disease, while inheriting just a single copy cause no symptoms, and makes the person a “carrier.”

While significant progress has been made in treating the disease, there is still no cure. Treatment depends upon the stage of the disease and the specific organs that are involved. Treatment is geared toward reducing the thickness and amount of mucus in the airways, preventing infections, preventing blockage of the intestines and ensuring the proper intake of vitamins and nutrients.

May is Cystic Fibrosis Awareness Month – CF Genes Day 2022

The South Africa Cystic Fibrosis Association (SACFA) is a Non-Profit Organisation, and as such is the primary cystic fibrosis support group and driver of advocacy for the treatment of cystic fibrosis in South Africa. Their objectives include communicating with the CF community, raising public awareness and promoting medical advancements. Fundraising is essential to sustain these objectives.

Join CF Genes Day on 25 May 2022! This event aims to create public awareness of cystic fibrosis in South Africa and helps raise funds for necessary medical equipment. In order to take part, each person needs to have a sticker and wear jeans. Individuals, groups, schools, and companies are encouraged to get involved, the proceeds raised will be used to purchase medical equipment and help spread awareness of Cystic Fibrosis in South Africa. See details here.

Sources: www.cff.org, rarediseases.org, wikipedia.org, theconversation.com, sacfa.org.za.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.