Living between Newent, Gloucestershire, and County Antrim, Northern Ireland, Olcán Wilkes was a normal six-year-old boy who loved football, playing with his friends and his four-year-old brother, Hunter. In August 2021 his life changed forever after his parents noticed severe bruising over his body.
Following a number of tests and treatments, in September 2021, and at just six years old, Olcán was diagnosed with aplastic anaemia.
Aplastic anaemia is a life-threatening blood condition and a form of bone marrow failure, affecting just one in a million people*. The incredibly rare condition was the cause of death for Eleanor Roosevelt, the former First Lady of the United States, and Marie Curie, the famous physicist and chemist. The average death rate for those with the condition is 70% within one year and 80% within five years for those under the age of 20, if untreated.
As well as his aplastic anaemia diagnosis, doctors also found traces of paroxysmal nocturnal hemoglobinuria (PNH) in Olcán’s blood. PNH is another rare blood disease which commonly can be caused by aplastic anaemia, leading blood cells to break apart.
Olcán’s parents Sam, a farmer and former retained firefighter, and Genevieve Wilkes, a senior project manager in the healthcare sector, are appealing to the public in their desperate hope to help Olcán and others like him.
It takes someone just minutes to become a bone marrow donor, with a simple online form to fill and painless mouth swab to return. These five minutes could save Olcán’s life. To register to become a bone marrow donor please visit:www.dkms.org.uk/register-now
Olcán has a rare bone tissue type, meaning he falls into the small percentage of people with no donor match. After his brother, family members and the global register were found not to be a match, the family decided to try immunotherapy to prolong his life. The treatment, called ATG, kills specific cells in the immune system that are attacking bone marrow stem cells. In mild to moderate cases of aplastic anaemia, ATG has a 60% success rate meaning that patients will no longer be transfusion dependent**. Due to the severity of Olcán’s condition, just three weeks after his ATG doctors are confident that the treatment is unlikely to be successful and as the usual wait is three–six months to determine the success, Doctors have decided to keep searching for a transplant as Olcán doesn’t have that long to wait.
Willing to do anything to keep their son alive, Olcán’s parents recently investigated the option of IVF so they could use a cord blood transfer from a selective embryo, a process that means having another baby might provide an identical bone marrow match for Olcán. Almost immediately after considering this, doctors informed Sam and Genevieve that their son does not have nine months to wait.
As he waits to find a match Olcán must undergo two to three platelet transfusions a week and two blood transfusions a month to keep him alive. Since being diagnosed in September, he has had over 25 platelet transfusions and five blood transfusions in total
Despite having to live in between his new home and hospital in Northern Ireland, with the support of charity Specialeffect.org.uk, Olcán has been attending school remotely via the use of a robot. ‘Sitting’ in a classroom back at his old school, St Joseph’s in Ross on Wye, England, the robot follows the teacher and class around for the day, allowing Olcán to continue with his treatment, without missing out on his education and interaction with friends. His family have also received support from Angel Wishes, a local charity who offer emotional and financial support to all children in the family.
You can read more about Olcán’s story and follow his journey here on Instagram www.instagram.com/theincredibleolc/ and on Facebook: www.facebook.com/Stem-Cell-Donor-for-Olc%C3%A1n-107801165061800
Sam Wilkes, Olcán’s dad said: ‘After Olcán’s diagnosis, it took a while for the severity of it all to sink in. We are desperate to encourage as many people as possible to take the two minutes it takes to register for the free swab, for Olcán and others like him. Those two minutes, and the time spent returning the swab, could quite literally save his young life.
‘Everybody that gives blood is making an enormous difference, too, watching Olcán go through multiple transfusions weekly. He’s just the most wonderful boy, who misses football, his friends and play fighting with his brother – and our abiding hope is that we can find a donor match in time.’