Families

Families

Living with a Rare and Chronic Illness

Insight into the challenges our families face…

Cystinosis, specifically, is a genetic metabolic disease affecting mainly children, and causes the build-up of an amino acid, cystine, in various organs of the body, such as the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells.

Without proper treatment, children with cystinosis develop end-stage kidney failure before age 10.  With treatment, children can live into adulthood, but the disease places a heavy burden on families. Most of our families live in low-income communities, often in RDP housing, and rely on taxis or buses to reach specialist medical facilities (e.g.  Red Cross Hospital) far from home. The cost of care, frequent hospital visits, and lack of awareness make daily life extremely challenging. Families often feel isolated due to the rarity of the disease and the emotional toll of raising a child with a chronic illness can be overwhelming. However, despite these hardships, families show incredible resilience, finding ways to cope and care for their children under very difficult circumstances.

The founders of Cystinosis Foundation South Africa, Gail and Colin Daniels, created the foundation in 2010 as they know firsthand the many challenges families face. For 12 years, they were in the dark trying to navigate their daughter’s symptoms – without a diagnosis and without access to the right treatment. In her desperation, Gail spent countless hours researching, often educating medical professionals herself. She was instrumental in introducing the liquid medication currently used in South Africa, and is now working tirelessly to navigate the complex process of bringing the oral tablets into the country.

The Challenges

Challenges Parents Face

  • Becoming medical experts – learning complex treatment routines.

  • Managing strict medication schedules (every 6 hours, daily eye drops).

  • Balancing protection with independence for their child.

  • Emotional stress – fear, uncertainty, guilt, and constant vigilance.

  • Financial strain – costs of treatment, travel, and special care.

  • Disrupted family life – routines, school, and work impacted.

  • Advocating with schools, doctors, and insurance systems.

  • Social isolation – few people understand the rare condition.

  • Coping with siblings’ needs alongside the sick child.

  • Planning for the future while facing unpredictable health outcomes.

Challenges Children Face

  • Strict daily medical routines – medication, eye drops, special diets.

  • Side effects – bad taste, odor, stomach upset, fatigue.

  • Frequent hospital visits – tests, check-ups, and possible transplants.

  • Growth delays – being smaller or weaker than peers.

  • Educational challenges – missing school, needing accommodations.

  • Social differences – explaining the disease to friends and teachers.

  • Limits on physical activity – due to fatigue, kidney issues, or safety concerns.

  • Psychological strain – fear of hospitalizations, feeling “different.”

  • Transitioning to independence – learning to manage their own care.

  • Facing mortality – living with awareness of a shortened life expectancy.

         Message Board

A BIG THANK YOU TO THE  CYSTINOSIS FOUNDATION for all their incredible effort in helping me and all the families with children who have cystinosis.

Thank you for your compassion and passion and for always being available and ready to assist in any way you can. I have felt only love through all the years I have known you. Whenever I have a question about anything, you are there to go out of your way to help. When I need comfort, you are there to offer support always and bring clarity about so many things.

May the Lord shine His light upon you, Gail, and the whole cystinosis support group. I appreciate all of you for your patience. Thank you.

Pinky Sifile
Parent

EVENING GAIL. Thank u and please tell everyone who makes this miracle parcel possible that we I eternally grateful for their support, care, love and pray.

We appreciate all that you do and these parcels happen to come everytime when we have no more resources at our disposal. It’s a gift from above.

I hope Danielle is doing better and please send our love. God Bless you, your family and the foundation.

Crystal
Parent in Johannesburg

BEING PART OF THE CYSTINOSIS SUPPORT GROUP in South Africa means everything to me.  It’s more than just a community – it’s a lifeline for individuals and families navigating the challenges of this rare genetic disorder.

The group provides a safe space to share experiences, find support, and connect with others who truly understand what we’re going through.

It’s a reminder that we’re not alone, and that gives me hope and strength every day.

Tarique –
Diagnosed with Cystinosis

HI GRANDMA GAIL it’s Kulo Mntwini I would like to thank  you for the things you sent and I love the clothes they are nice and I enjoyed the snacks and thanks for the voucher.

It helped so much  now I can have school lunch for next week so I am very thankful & appreciate that there are people out there including my family that supports and love me ❤

Kulo Mntwini
Diagnosed with Cystinosis

Butterworth, Eastern Cape

THANK YOU MAMA GAIL AND THE BOARD, you make our lives very easy from the beginning because l didn’t have any hope but I because of you guys I’m strong for my son now….Thank you again and your family too. Please don’t get  tired of  us…..God will always bless you. He s gonna continue to bless the Foundation –

Maseka
Parent

Gugulethu, Cape Town