A rare diagnosis changed everything for Jada, but it did not take away her joy, her strength or the hope that is now guiding her family through a life-changing journey far from home.
Boston, USA (30 January 2026) – Nothing prepares you for watching your child step into the unknown, especially when that unknown is shaped by a rare diagnosis and a future once described as impossible. And yet, right now, in a hospital far from home, a 15-year-old South African girl is doing exactly that, with grace, resilience and a determination that is leaving everyone around her in awe.
Meet Jada. Brave, beautiful, and living with Vanishing White Matter Disease (VWMD), a rare genetic neurological condition that slowly damages the brain’s white matter, affecting movement, balance, speech and, over time, essential life functions. There is no cure. Treatment options are scarce. Hope is hard-won.
And yet, against overwhelming odds, Jada was recently accepted into a clinical trial in Boston, USA. A moment that has changed everything.
To make this possible, her mom, Kim Lubbe, made the hardest decision a parent can make. She left her job, her home and everything familiar in South Africa, travelling to the United States with Jada and Jada’s devoted Granny, Marie, for a seven-month clinical trial that could alter the course of this disease. It is a journey filled with uncertainty, courage and hope, and one that is already showing signs of something extraordinary.
When Kim speaks about Jada, hope doesn’t come from the medicine or the hospital or the science. It comes from her daughter.
“When I look at Jada right now, what gives me the most hope is simply her. I am in absolute awe of how she has adapted to this journey. Jada has never liked change, and yet through everything… the uncertainty, the transitions, the waiting, she has taken it all in her own time and shown such strength. She continues to amaze me every single day.
When Jada was diagnosed at just two years old, we were in the United States and we were told there was no hope. We were advised to go home. That moment shattered us.
Standing here again now feels like coming full circle, but this time the story is different. This time we are here with treatment, with support and with hope. This time we are witnessing moments that once felt impossible, and it truly feels like we are watching small miracles unfold.”
Being accepted into the clinical trial has meant more than a medical opportunity. It has meant a shift in what the future could look like, for both mother and daughter.
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“I have spent Jada’s entire life protecting her sense of normalcy. I never wanted her to feel that her life is different from anyone else’s. Yes, we do things differently, but I don’t tell her she is sick and I don’t talk to her about her disease. We live our lives like every day is our best day ever, because that’s what matters most.
Some days that is incredibly hard. On the days I watch her battle through therapies, or the nights we fall asleep in the paediatric ward after another seizure, or in quiet moments when I catch glimpses of what ‘normal’ looks like for other children. Those moments hurt.
This treatment gives my girl a chance at some of the independence I dream of for her. And the truth is, Jada is happy. This is the only life she knows, and it is a beautiful life, even with its struggles.”
Arriving in the United States came with its own set of fears. Change has always been Jada’s biggest challenge, and everything about this journey was unfamiliar.
“I knew change would be our biggest hurdle. Jada does not cope well with it at all, and yet she amazed me from the start. That flight was long, but she handled it better than I ever expected.
Medical settings have always been difficult for her, so walking into new hospitals, new doctors, new systems and even a different culture filled me with anxiety. We landed on the 4th of November and by the next day we were already at our first appointment. I went into survival mode. I don’t remember much of that first week.
It took about four weeks for Jada to settle, and those weeks were incredibly hard for me. I questioned everything. Then came the day she officially started treatment. It was the longest day of waiting, but also one of the best days of my life.”
What followed were the smallest changes, the kind only a mother watching closely would notice.
“By day two, I remember thinking she was turning the pages of her book with less tremor. Now, eight weeks in, I can say this with confidence… this girl is thriving. The fear has softened. The anxiety has eased. And once again, she is showing us just how strong she is.”
On the days when the weight of it all feels heavy, Kim leans on faith and on home.
“My faith has carried me. God has placed the right people in our lives and firmly set us on the path we are meant to be on. Video calls back home have been a lifeline, and being away has reminded me just how special our country and our people are.
I miss Fourways traffic. I miss robots that don’t work. I even miss taxis. I miss Checkers, the sunshine and the familiar faces. Knowing that we get to go home in a few months gives me something solid to hold onto.”
The support from South Africans has made a tangible difference, allowing Kim to focus fully on Jada’s treatment.
“The kindness has been overwhelming. I remember going for a walk after the GoFundMe was launched and realising how many people had shown up for us. I stopped and thought, why are people helping us?
And then I realised that Jada has an extraordinary light. She reaches people. She touches lives in ways she doesn’t even know yet. That kindness has allowed me to breathe. It has taken the weight off just enough for me to be present for my daughter.”
For parents walking similar roads, Kim’s message comes from lived experience.
“Being a parent is a privilege, no matter what your journey looks like. Your child is not a checklist or a comparison. They are your pride and joy. Needing help does not mean you are failing. Just showing up, day after day, already makes you an incredible parent.”
Jada’s journey is far from over. There are still months to come, appointments to face, and many unknowns ahead. But there is also progress, possibility and a young girl who continues to defy expectations simply by being herself.
You can follow Jada’s journey and the latest updates on the Jada Foundation’s Facebook page, or, if you would like to support her, visit her crowdfunding page. And if her story reminds us of anything, it’s this: hope can travel across oceans, courage can show up in the smallest hands, and sometimes the bravest thing you can do is keep going, one day at a time.
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