Little warrior J cystic fibrosis story

21/05/2026

My ou groot seun... jy is so sterk

21/05/2026

21/05/2026

: In the 1960s, a young boy named Richard (Ricky) Weiss overheard his mother talking about cystic fibrosis on the phone. Unable to pronounce the words, he thought she was saying:

🌹 “65 Roses”

The phrase touched hearts across the CF community and became a lasting symbol of awareness, hope, and resilience for those living with cystic fibrosis.

19/05/2026

Ai my liefie kind. Jy was nou so mooi gesond en toe kom maak daai gogga jou weer siek. Wag nou vir sy bed.
Klaar met xtrale, bloede en drip op. Nou wag ons vir uitslae

18/05/2026

🧬 CF Genes Day is almost here!

A reminder to save the date and get ready to stand with the CF community as we raise awareness and celebrate progress in Cystic Fibrosis care and genetics - and of course wear our jeans!

Are you ready? 👀
Visit:https://sacfa.org.za/cf-genes-day-2026/

18/05/2026

: Hospital stays, IV antibiotics, clinic visits, treatments, scans, blood tests, admissions, discharge bags packed in a hurry…For many people living with Cystic Fibrosis, this isn’t an “exception.” It’s part of life.

According to our Registry Report (2023), in South Africa over a third of people with CF had 5 or more clinical visits in a single year, while nearly half faced serious lung infections linked to intensive treatment and hospital care.

Raise your hand if you or your loved one has had more hospital stays than you can count?

Need tips on how to make the best of your hospital stay? Link in the comments.

18/05/2026

Hello almal. So bietjie nuus oor J.
Hy het gister begin met lelike hoes. Ons hou hom mooi dop en hy drink sy nodige medikasie en neubilize ens.

Oor sy duur medikasie het ons mos besluit hy gaan op die generiese pille gaan wat klein bietjie goedkoper is. Triko is nou amper beskikbaar maar dis nog so bietjie deur mekaar van hoe kry mens dit en presies wanneer. Daar is net soveel wat Suid afrika toe kom. En daar is kinders wat baie sieker is as J. So ons moes ñ besluit neem dat as als uitgesorteer is met invoer kostes ens dat hy eers Desember 2026 op dit kan gaan. En dat ons sieker mense 1ste ñ kans op dit gaan gee.

Hierdie mamma hart kan nie meer hierdie besluite vat nie. Ek sukkel maar nog partykeer met als. Al die meds. Die neus, die hoes, die gemoum.. maar J is ñ dapper seuntjie.

Ons wil ook baie dankie sè vir Arms of Mercy wat sy bloedtoetse gaan betaal. Asook gaan hy 1 Junie weer Neurochirurg toe vir sy opvolg en hul gaan ook daai konsultasie betaal. Dankie dat jul dit bietjie ligter maak vir ons.

Bid asb dat J gou weer gesond word. Want sy hoes bekommer ons.