for Children
with very high risk leukaemia

WE NEED TO DO better

The deep despair and pain you feel when you lose your little girl is indescribable

The Foundation aims to protect all parents around the world who has a child with a very high-risk leukaemia from ever having to face this feeling.
Whilst we have lost our daughter, her strength, her resolute, and her dream to help people remains within us

We draw upon this, and in her name, we aspire to offer this currently underfunded and neglected disease a platform

Objectives of the Foundation

Patient advocacy

Giving affected patients and parents a voice throughout their journey: We give patients, parents and families a voice and a platform to connect

We provide to our community (not exhaustive):
- A forum / messaging platform where you can connect with affected patients and families, and access clinical experts who can help you identify and reach out to the relevant specialists
- A library of clinical and scientific literature of VHR-L (by genetic subtype)
- A summary of other charities that can help

We are always looking for additional ways to support the community, please reach out with any helpful ideas you may have

Join us to here

Pre-clinical science

Supporting relevant pre-clinical innovation for Very-High-Risk leukaemia: We are currently developing long-term, international collaborations involving European and US academic and clinical centres of excellence

Clinical medicine

Funding clinical efforts to provide personalised, less toxic solutions: We are part of innovative approaches to develop precision medicine solutions for patients.

In particular, we are supporting a personalized oncology medicine platform for VHR-L patients to screen susceptibility to treatment (called Drug Response Profiling, DRP). The DRP allows informed decisions for experimental treatments by testing 200+ candidate drugs on patient cancer cells. Since its development, the DRP has grown significantly over the last years, now reaching over 100 patients a year. We aim to scale the current platform across major pediatric centers, embedding the DRP as standard-of-care.

Who is Kaiya?

Kaiya inspired hundreds of people around the world to hold fundraising events to raise awareness for this unforgiving disease, and she encouraged 40,000 people to join stem cell registries in her name

Her story went viral on social media, it was on the radio, in the news, and it was even raised in parliament. There was a buzz of energy, people were talking about this neglected disease, and Kaiya had created a movement

read her story