ACLT (African Caribbean Leukaemia Trust)
ACLT is a 30+ times award winning charity committed to providing hope to patients living with blood cancer and illnesses where a matched donor (stem cell, blood or organ) is required to save a life.
I joined the UK stem cell register in 2005, through ACLT (African Caribbean Leukaemia Trust) whilst at Notting Hill Carnival.
I was approached by an ACLT volunteer whilst I was standing around soaking in the carnival atmosphere. They asked me if I wanted to join the stem cell register (back then it was referred to as the bone marrow register). I hadn’t previously been aware such a register existed; however once I heard the volunteer speak on the woefully low numbers represented on the register for individuals of ethnic origin, it made perfect sense for me to be involved. I signed up on the spot.
Fast forward to 2007 I was contacted and informed I had come up as a match for someone. I felt so happy to know that I would be doing something so amazing. I would be saving the life of someone in need. It really was a no brainer.
In the lead up to me donating I was provided with information about the two ways in which I could donate my stem cells, the preparation involved, what happens on the day of donation and the recovery period for both options. I was then given the opportunity to decide which option I preferred to proceed with. I decided to donate via Peripheral Blood Stem Cell donation, which is very similar to giving blood. Prior to my donation day I was given injections to stimulate the production of the blood stem cells.
In October I went ahead with the donation which mostly involved me lying down for 5 hours whilst I had my blood filtered. I had some minor side effects; I felt dizzy and weak however the upside was emotionally, I felt fantastic! I had completed my donation journey. Someone out there was going to receive a second chance by receiving my donation.
A few years after my donation I decided to become a volunteer for ACLT as my experience as a lifesaving donor was a wakeup call to me to support an organisation like them, in return for the support they provide to my community. Additionally my donation had me thinking about the many patients who were still in need, waiting for an unrelated stem cell matched donor to be found. I wanted to use my positive experience to encourage others to follow in my footsteps.
As told by his mother Nadine:
In March 2015 after Damary’s 9th Birthday I noticed Damary’s lymph nodes behind both his ears were swollen. I took him to the GP and they said it was an infection and he was given antibiotics to take for seven days. One week followed and the swelling became worse, and I noticed he was not as active as he used to be. He was losing weight, sleeping a lot and snoring very heavily.
The GP referred him to the hospital for a blood test, ultrasound and MRI scan. All the tests came back negative and they said they couldn’t find anything wrong with Damary.
As a parent you know when there’s something not right with your child so l demanded that the doctors do further tests for something else. One of the tests they did was a biopsy. It showed Damary had leukaemia (Acute Lymphoblastic Leukaemia) and that was the beginning of our nightmare.M
Damary is a very active child, he loves karate, swimming, athletics and he’s brilliant at playing football and is currently playing for Euro Dagenham F.C, so to be told he had cancer was very devastating! Doctors had previously said Damary’s treatment for his leukaemia would last three years, so he was due to complete chemotherapy 2018. During the course of his treatment it was a very difficult time for our family but as years went by we were looking forward to the end of him receiving all the toxic drugs which was helping to treat him. It was the best news for Damary and our family when the doctor told him that his treatment would end in July 2018 and he would be free from cancer and would be able to carry on with his life with no restrictions on what he could eat or which activities he could take part in. We had even booked a family holiday to Spain to celebrate the end of his treatment, and scheduled to leave on the 19th August 2018.
In May 2018 Damary’s blood test showed he had fallen out of remission, the leukaemia was returning which was puzzling to the doctors as Damary’s treatment should have been finishing in two months and he’s on the strongest chemotherapy there is for his leukaemia.
At the time they explained Damary needed an urgent stem cell (bone marrow) transplant in order to survive as the cancer came back and it’s more aggressive than before and chemotherapy alone will not work. Damary was immediately admitted to hospital, where he has been in and out up until January 2019. Throughout this time he had numerous infections, severe high temperatures and constant headaches.” A few days before Christmas, Damary received the gift he had been longing for, a stem cell transplant. Damary, who lives in East London received the donated stem cells from an unrelated donor whilst as an inpatient at University College Hospital (UCLH), London.