Kevin Kararwa Leukaemia Trust

29/10/2025

Toddler with Rare Blood Disorder in Urgent Need of Stem Cell Donor

A two-year-old boy who has spent most of his life in hospital is in desperate need of a stem cell transplant to survive.

Maison was diagnosed with Wiskott-Aldrich Syndrome (WAS), a rare and life-threatening genetic blood disorder, when he was just one year old. The condition severely weakens the immune system and affects the body’s ability to clot blood, causing symptoms such as easy bruising, eczema, bloody diarrhoea, and prolonged bleeding even from minor injuries.

WAS almost exclusively affects boys, around three in every million worldwide, because it is caused by an error in a gene on the X chromosome. While females have two X chromosomes (one acting as a backup), males have only one, leaving them more vulnerable to the disorder.

Due to the seriousness of his condition, Maison cannot play with other children and has spent much of his young life receiving treatment at Great Ormond Street Hospital in London.

Doctors have now told his parents, Stella and Elsi, that a stem cell transplant is his only chance of survival.

“This is one of those things you think only happens to people on TV,” Stella said.

The family, who are of Greek and Albanian heritage, have partnered with Anthony Nolan to launch the campaign. They are urgently appealing to 16–30-year-olds to join the stem cell register and give children like Maison a second chance at life.

Stella, who left her job as a hairdresser to care for her son, said:

“We’re taking things day by day. All we can do is be there for Maison and hope that one day we can start to rebuild our lives.”

She recalls how the first signs of illness appeared when Maison had an allergic reaction to food. “I thought it might just be eczema because of the spots all over his body,” she said. “Then doctors mentioned a possible blood infection. The tests were so hard on him—he doesn’t understand why he has to go through all this. Sometimes he cries so much he passes out. It’s heartbreaking.”

Maison’s grandfather, Dee, said the last 18 months have been extremely difficult for the whole family.

“We want to raise awareness not only about Wiskott-Aldrich Syndrome but also about stem cell donation. Joining the register could save someone’s life,” he said.
“If you’re aged 16–30, please sign up. You could be the match that saves a child like Maison.”

For more info regarding stem cell donation > https://www.kkltrust.org/?page_id=6916

29/10/2025

If you are aged 16-55, please sign up to the stem cell registry. You could be the match that saves the life of someone. Your age, location and current health status are important.
Check to see if you can become a potential donor > https://www.dkms.org.uk/register-now

27/10/2025

25/10/2025

🔄 Please share: Phenyo’s search for a lifesaver. 🔄
“Please, if you’re reading this, register. Even if it’s not for Phenyo, it could be for another child waiting,” shares Phenyo’s mum, Emily.
Diagnosed with acute lymphoblastic leukaemia (ALL), six-year-old Phenyo urgently needs to find a matching stem cell donor. Without one, his chance of survival is slipping away...
“With everything we’ve been through, I still believe there are kind people out there,” says Phenyo’s mum, Emily. “People who will see my child not just as another story, but as a little boy who deserves a chance.”
Little Phenyo is a bright spark who loves baking. But when the once-bubbly boy started to get constantly tired, short of breath, and couldn’t eat, his family took him to the hospital. This is where they received his diagnosis of blood cancer.
Since then, Phenyo has been in and out of the hospital - fighting off the flu with dangerously low blood counts.
Right now, no match has been found — and time is running out. ⏳
✨ You have the power to give Phenyo (and others like him) a chance at life.
👉 Register as a stem cell donor today: https://brnw.ch/21wWUda
Because every child deserves to grow up.

24/10/2025

🎉 Birthday coming up? Let’s make it count.

This year, skip the gifts and start a birthday fundraiser to help people fighting leukaemia. 🩸💜

Your big day could literally give someone else a second chance at life, how amazing is that?

👉 Set up your fundraiser, share it with your friends, and celebrate by saving lives. Because honestly, impact looks good on everyone.

23/10/2025

💔 “I haven’t come this far to not find a match. The situation’s dire - but I have hope.”
26-year-old Christina from London was living life to the fullest — loving her job, running regularly, and spending time with friends. Then came the news that changed everything: she was diagnosed with stage 4 blood cancer.
💫 Now, her only chance of survival is a stem cell transplant - and she urgently needs your help. Please SHARE this post to help Christina add more donors to the stem cell register!
For people of UK ethnic minority heritage, finding a matching stem cell donor is much harder, which is why Christina is calling on more people of Black Caribbean heritage, like her, to register as donors.
She reflects: “I’d just had the best six months of health I’d had in ages, I had no clue anything was coming. Looking back, one symptom I did have was tachycardia - it was really annoying and persistent, like my arteries were being squeezed.
“Then, in June, I was on holiday with friends and started feeling sick. I was struggling to swim, and I had this ominous feeling, like something was sitting on my chest.
“When I got back from holiday, I went to clear my throat and suddenly coughed up blood. I went to A&E and had many tests… Eventually, I got the news: I was diagnosed with stage 4 T-cell lymphoma in the lining of my lungs. I remember thinking, ‘how was I walking around with stage 4 cancer? I was fine last week!’
"I lost my mum to motor neurone disease and my sister to asthma. So when I got my cancer diagnosis, it was terrifying - I kept thinking, there’s this pattern of bad health in my family.
“Because of the type of cancer I have, this means chemo is not enough, and I’ll need a stem cell transplant. My brother in Jamaica got tested, but unfortunately, he wasn’t a match for me. Around the same time, my grandpa passed away. I was bad news after bad news... but I still have hope that I will find a match.
"I want to share my story because more people from Black backgrounds need to be on the stem cell register. It could really improve the chances for people like me.”
Here’s how you can help Christina right now:
✅ Aged 17-55? Register as a stem cell donor at https://brnw.ch/21wWLNI
🔁 SHARE this post - every engagement helps us spread the word and raise awareness about the stem cell register.

20/10/2025

Leukaemia isn’t just one disease, it’s a group of blood cancers that affect the bone marrow and white blood cells.

🩸 Main types of leukaemia:

-AML (Acute Myeloid Leukaemia) – fast-growing, affects myeloid cells
-ALL (Acute Lymphoblastic Leukaemia) – often found in children and young adults
-CML (Chronic Myeloid Leukaemia) – progresses slowly, affects adults more
-CLL (Chronic Lymphocytic Leukaemia) – develops slowly, usually in older adults

Every person’s journey is unique, but our mission remains the same: raise awareness, encourage research, and inspire hope.

17/10/2025

Today we join the global community in recognising International Developmental Language Disorder (DLD) Awareness Day, a day that reminds us how vital communication is for connection, understanding, and care.

For those affected by leukaemia and other blood cancers, communication can already be a challenge, from understanding medical terms to expressing how they truly feel and when someone also experiences DLD, a speech or language difficulty, those barriers can grow even higher.

At Kevin Kararwa Leukaemia Trust, we believe that everyone deserves to be heard and understood. That’s why we work to make health information accessible, inclusive, and compassionate, especially within diverse or underserved communities.

This DLD Awareness Day, we encourage you to get involved:
✅ Learn about DLD and how communication barriers affect access to care.
✅ Listen with empathy, every patient’s story matters.
✅ Share this message to raise awareness of both DLD and leukaemia.
✅ Register as a stem cell donor, your voice and your action could save a life.
✅ Volunteer or support KKLT as we work to educate, empower, and connect communities.

16/10/2025

14/10/2025

🩸 Leukaemia and some cancer treatments can sometimes affect vision or cause changes in the eyes, such as:

-Blurred or double vision

-Tiny spots or floaters in your sight

-Eye pain or pressure

-Swelling around the eyes

👩🏽‍⚕️ That’s why regular eye check-ups are so important, not just for your sight, but for your overall well-being. Early detection can make a huge difference.

💪 This , we’re reminding everyone to:
✔️ Schedule an eye test
✔️ Look out for changes in your vision
✔️ Encourage loved ones to care for their eye health too

💜 Your vision matters. Your health matters.
Together, let’s keep shining a light on awareness, care, and hope.

08/10/2025

At the Kevin Kararwa Leukaemia Trust, we believe heroes come in all forms and you could be one without even knowing it yet. 🌟
Every year, people battling leukaemia and other blood cancers wait for one match, one person willing to step up and save a life.
🧬 Right now, Black, Asian, and Minority Ethnic patients are less likely to find a matching stem cell donor.
That’s why your registration matters more than ever.
💪 Today is Stem Cell Awareness Day and we believe Together, we can close the gap and bring hope where it’s needed most.
👉 Sign up today and be someone’s hero. > https://www.kkltrust.org