‘My son Olcan’t life can be saved by the right bone marrow donation’

Mum of two Genevieve Wilkes, takes a deep breath as she remembers the first signs of her eldest son’s illness.

“The first thing I noticed Olcan came back from a football camp with a massive bruise on his ankle. The ankle was black but he wasn’t sore.

“A few days later he tripped, just a normal fall, and his arms ended up black. Then one weekend he was at a the park and had a small stumble off the play equipment.

“The floor was rubber. He hit his face and the whole side of it ended up drastically bruised and then I knew something was really wrong.

“The bruises didn’t even take time to show, they were just coming up immediately.”

Wilkes, who moved to Co Antrim from England in July, is talking about her six-year-old son Olcan, a usually sprightly young boy who loves “being active, physical, playing with his brother Hunter (4), rushing out to enjoy a game of football and all kinds of superheroes”, before his health rapidly deteriorated due to aplastic anaemia, which has made him dependent on blood transfusions to stay alive and for which the only cure is finding a suitable bone marrow donor.

Aplastic anaemia is a condition that occurs when the body stops producing enough new blood cells.

The condition leaves you fatigued and more prone to infections and uncontrolled bleeding.

It is a rare and serious condition, which can develop at any age. It can occur suddenly, or it can come on slowly and worsen over time.

Treatment includes medications, blood transfusions or a stem cell transplant, also known as a bone marrow transplant.

Of the onset of Olcan’s illness Genevieve recalled: “I phoned the health clinic at Randalstown and blood tests showed his blood cell and platelet count was dangerously abnormal, and I was immediately told to pack a bag and take him to the Oncology and Haematology Ward at the Royal Victoria Hospital in Belfast for what would be the first of many blood transfusions.

“That was a terrifying call for any parent to get.

“They did bone marrow biopsies which came back inconclusive, and doctors were baffled at first because they had suspected it was leukaemia but eventually he got the diagnosis of aplastic anaemia.

“Nothing could have prepared us for the devastation that would ensue.

“My little boy has gone from being happy and energetic to be being too tired to get out of bed or do anything. He hasn’t been able to even start school or make new friends and having just moved here, most of his older friends are back in England.

“Then because of Covid he has had various admissions to hospital outside of appointments for blood transfusions because he has absolutely no immunity whatsoever and is often locked off in a ward on for hours at a time, although I try to be with him 24/7.

“There is a wall outside the unit he is in and it has all kinds of pictures and words children have painted about their feelings from ‘happy’ and ‘grateful’ to ‘sad’.

“But Olcan points at ‘lonely’ repeatedly and tells me ‘Mummy, I think that is how I feel now everyday’.

“Sometimes he will say: ‘Mummy, am I sick?’ I tell him that he is, but he’s so positive he tells me all the time that he doesn’t feel sick.

“It absolutely breaks my heart to have to watch my son deteriorate in such a dramatic way.

“His father is living and working in England - I cannot work as a full-time career for Olcan and if my husband wasn’t doing his job in England we would have no income.

“So I am a newbie here, so I don’t know so many people, but I have to say that the response from the local community in Co Antrim and even from the school that Olcan has not been able to attend yet has been absolutely incredible.

“But, nevertheless, this is very, very hard, yet I have no choice but to keep going for Olcan and his brother Hunter, who are both the lights of my life.”

When his red blood cell and platelet counts were registered as being dangerously low, that was the moment Olcan’s condition was appreciated in its severity - although it took a month for the proper diagnosis to be made.

“A normal range for red blood cells should be 100 plus and platelets should be in the 300s, but Olcan’s platelets were at seven and red blood cells in the 80s which is of course extremely serious,” confides Genevieve, who is palpably distressed when discussing her son’s illness.

Sometimes, after a transfusion Olcan has had an allergic reaction to the platelets that he has been administered, and swelling, hives and vomiting treated with antihistamines have been the result.

“Now every two weeks Olcan needs a mix of blood and platelet transfusions - the body typically makes these itself every few days but Olcan’s little system is not making any.

“To be clear he is not producing any red or white blood cells or platelets. He is completely blood transfusion dependent to keep him alive.

“Aplastic anaemia amounts to complete bone marrow failure and the only cure is a bone marrow transplant.

“The doctors were convinced we would find a bone marrow donor easily, but then we had the devastating news that he had a rare tissue type meaning a match was not available for him on the global database.

“I want to raise awareness to encourage people to become bone marrow donors, not just because we desperately need one for Olcan, but others are suffering in this way and donating bone marrow is something you can recover from in just 12 weeks.

“The impact on the donor is very small, but for the child or adult who needs one it can make the difference between life and death.

“The right donor is the only hope for Olcan - the only possible cure.

“We made the decision to go ahead with an immunotherapy treatment (ATG) which helps in the fight against anaemia but it isn’t a cure. It will simply stabilise cell and platelet count although it does not always work even in mild cases and Olcan’s case is obviously extremely severe.

“ATG is only buying us time. The only cure is a donor.”

At the moment Olcan spends half the week in hospital receiving the necessary transfusions, which come with significant risks and can be a traumatic and lengthy process.

At one point the brave six-year-old underwent 30 blood transfusions in just ten weeks.

“It’s the loneliness that’s the hardest thing for him because obviously because of Covid he’s in isolation all the time.

“Sometimes I can try to be cheery and matter of fact, but then something will catch me off guard and make me feel tearful, emotional and devastated. It is so hard to see your own son, or indeed any child, go through something like this. But I just have to pick myself up and stay strong for him because I don’t have any choice.

“We have been thrown into this terrible situation and I would just like to urge people to sign up to become bone marrow donors in the hope that we find a suitable match for Olcan. But obviously, there are many others in Olcan’s position and I think they deserve the same chance at life.

“So I am asking people to sign up to the donor registry. I also want to raise awareness of the absolute importance of blood and platelet donors, without whom Olcan would not be with us right now continuing to fight aplastic anaemia so bravely.”

To become a bone marrow donor yo visit https://worldmarrowdonorday.org/become-a-donor/or www.bbmr.co.uk/joining-the-register/.

Follow Olcan’s journey on Instagram @theincredibleolc.