Son's diagnosis unmasks woman's painful journey with haemophilia

Behind every child who needs a clotting factor is a caregiver trying to get them to the hospital before a bleeding episode becomes life-changing. [Courtesy]

Mary Chimoli thought the prolonged bleeding she experienced was simply part of being a woman. Then her son was diagnosed with haemophilia. The revelation exposed a family history of unexplained deaths, shattered her marriage and plunged her into a years-long battle to secure treatment for her son.

Chimoli remembers the moment she was told she was a haemophilia carrier. It was not a relief. It was a revelation that seemed to explain everything that had gone wrong in her life, the bleeding that could last 15 days, the shame she experienced as a schoolgirl, the unexplained illness of her mother, the deaths of four siblings and, now, the suffering of her son.

“When my child was diagnosed with haemophilia in 2017, that’s when I was told I was a carrier,” she says.

Until then, Chimoli had never heard of haemophilia.

“All along, we didn’t know what haemophilia was,” she says.

Her son’s diagnosis suddenly forced her to confront a genetic condition that had travelled silently through her family for generations.

The diagnosis also gave meaning to losses that had haunted her family for years. Chimoli was one of eight siblings. Four died, but for years she never knew why.

“We were eight siblings and as we speak now, we are the only remaining four of us, others died, the deaths we had known nothing about,” she says.

She also remembers watching her mother bleed without understanding what was happening.

 “I saw my mother bleeding, but I didn’t know the reason,” she recalls.

Her mother was frequently sick and eventually died in 2015. Chimoli says her mother's condition also affected her parents’ relationship. Her mother separated from her father, leaving Chimoli to grow up without understanding the illness that had contributed to the breakdown of the family.

No diagnosis connected the bleeding, illness and deaths. There was simply loss, followed by silence.

Only after her son's diagnosis did Chimoli begin to see the pattern.

For her, haemophilia was no longer just the condition affecting her child. It was potentially the explanation behind a family history she had never understood.

The signs had also been present in her own life since childhood.

Her periods were unusually long, sometimes lasting up to 15 days. As a primary schoolgirl, she recalls being accused of having had an abortion because of the bleeding.

She struggled to afford sanitary pads and had no explanation for why her periods were so different from those of other girls. There was no diagnosis and, more importantly, no one telling her that prolonged or unusually heavy bleeding could be linked to an underlying bleeding disorder.

“It was a shameful life,” she says.

For years, she accepted the bleeding as part of her life. Then her son was diagnosed and everything changed.

What had seemed like isolated problems began to form a pattern: her own prolonged bleeding, her mother’s unexplained bleeding, the deaths of four siblings and now her son’s diagnosis.

But the revelation came at a cost.

Chimoli says learning that she was a carrier affected her marriage. Her husband struggled to understand what being a carrier meant and, she says, treated her as though she had haemophilia herself. The marriage eventually ended.

“I felt like I was cursed. I felt like my life was over, but here I am still fighting and hoping for the best,” she says.

The stigma did not end with the breakdown of her marriage. Chimoli says people have judged her and treated her differently because of her condition and family history.

Over time, she became increasingly isolated.

Her unexpected support system came from social media. Through TikTok, she found people willing to listen to her story and support her family. The platform became a source of both emotional and financial assistance.

“I don’t have friends now. TikTok has been my family. I survive with TikTok. I live with TikTok,” she says.

For a woman raising children while dealing with financial hardship, stigma and the medical needs of a son with haemophilia, that support has sometimes been the difference between coping and falling apart.

Learning she was a carrier broke Chimoli emotionally, watching her son lose his mobility nearly broke her completely.

Wayne, who is now 10 years old, was diagnosed with haemophilia in 2017.

But his story did not begin with disability. At about one year old, Wayne was walking on his own two feet like other children his age.

“At the age of one, Wayne was walking on his feet like the other children,” Chimoli recalls.

He was developing normally and his mother had no reason to imagine that his future would be shaped by a condition that could eventually affect his mobility.

Then the bleeding episodes began.

From infancy, Chimoli says, bleeding became a recurring part of his life. She remembers episodes in which he bled for prolonged periods, including one involving his lips that lasted eight days.

She eventually took him to hospital, where he was referred to Moi Teaching and Referral Hospital in Eldoret and diagnosed with haemophilia.

The diagnosis brought an explanation, but it also opened another difficult chapter: accessing treatment.

Wayne needed a clotting factor to replace what his body lacked and help control bleeding. But the family lived in Lokichoggio, far from specialized treatment.

Getting to Eldoret could cost Sh6,000 one way and another Sh6,000 to return.

“We used to pay Sh6,000 from Lokichoggio. That’s how we got to Eldoret, and we still had to pay Sh6,000 to go back,” she says.

That meant Sh12,000 for transport alone, before food, accommodation and other expenses.

For a family already struggling financially, every bleeding episode became a crisis.

“I cannot count how many times my son has been unwell. Any time we wake up when he is in good health, we always thank God,” she says.

Every episode meant another calculation. Could she raise the transport money? Would the hospital have a factor? Could they reach specialized care in time?

For families living far from treatment centers, haemophilia is therefore not only a medical challenge. It is a battle against distance, poverty and time.

Chimoli says the darkest period came around 2021, when access to factor treatment became difficult. At the time, she says, supplies were affected by disruptions and donations from outside the country were not readily available.

The consequences for Wayne were profound.

His mother says repeated bleeding, coupled with difficulties accessing treatment, affected his limbs and gradually changed his mobility.

The child who had once walked like other children eventually needed a wheelchair and other assistance.

For Chimoli, that transformation was devastating.

She had watched her son take his first steps. She had seen him walk, play and grow like other children. Now she had to watch him lose abilities he had already acquired.

The change also exposed the devastating consequences that bleeding disorders can have when treatment is difficult to access.

Wayne's disability was not something his mother had expected when he was diagnosed. It emerged after years in which the family struggled to consistently access the treatment needed to control bleeding.

For Chimoli, the memory of her son walking remains particularly painful.

Chimoli says he has faced rejection because of his disability and condition. Some schools, she says, have suggested that he should attend a special school rather than a mainstream institution.

For Chimoli, the problem is not simply that her son has haemophilia. It is that society often sees the condition before it sees the child.

She wants Wayne to be treated like other children, given an opportunity to learn, play and build a future. But even finding a home has become difficult.

After moving to Nairobi, Chimoli says she experienced discrimination from a landlord who did not want children, particularly a child with a disability, living in the compound. She says the landlord argued that his own children would not have enough space to play.

For a mother already struggling to meet medical expenses, losing a home added another burden.

Haemophilia has affected nearly every part of Chimoli’s life.

It has affected her relationships, her ability to work, her children’s education and her financial stability. She says she takes casual jobs and sells products when she can, while also relying on people she has met through social media.

But her biggest concern remains access to healthcare.

In 2024, Chimoli moved to Nairobi largely because of Wayne’s medical needs. She began seeking care at Kenyatta National Hospital, which she describes as a lifeline for families living with haemophilia.

Before moving to Nairobi, she says accessing appropriate treatment was extremely difficult. At local health facilities, she encountered health workers who did not understand the condition.

“You go to the dispensary and they tell you to leave. Where do you find yourself? KNH,” she says.

For Chimoli, the journey to Nairobi was not about seeking a better lifestyle. It was about finding a place where her son could receive specialized care.

Her experience has also convinced her that awareness must begin much earlier.

She wishes she had known that her own bleeding could have been a warning sign. She wishes her family had understood why her mother bled and why four of her siblings died.

Most of all, she wishes she had known that she carried the condition before having children.

“I wish I knew I was a carrier. I wouldn’t have let my kids go through this.”

The statement carries guilt, but it also reveals the consequences of a diagnosis that came too late.

Her message is simple: women need information, families need counselling and mothers should not be blamed for genetic conditions they did not know they carried.

“Don’t judge them,” she says. “Because there is something that brought them there. I didn’t plan my life to be like this.”

To women who discover that they are carriers, she has another message: acceptance.

“Accept this situation because you have already got it,” she says.

For Chimoli, acceptance does not mean giving up. It means refusing to allow shame to define the relationship between a mother and her child.

She worries that denial and stigma can eventually lead mothers to resent children for a condition that neither of them chose.

There are days when she feels exhausted. There are days when she struggles to find work. There are days when she worries about rent, food and hospital bills. And there are days when seeing her son struggle with his disability makes her question what his future will look like.

“Not giving up is my biggest challenge,” she says.

Her dream for Wayne is remarkably simple.

She wants him to go to school. She wants him to grow up. She wants him to live independently and experience a life beyond hospitals and pain.

“I have always wished my son well. I would love to see him become a grown man and shame my family members who have always predicted his death at a young age because of his condition,” she says.

For a mother who has spent years navigating a condition she never knew she carried, that hope is powerful.

She wants her son to have the future she once imagined for him before haemophilia changed everything. And she wants him to prove wrong those who have already decided that his disability defines his future.

“I keep fighting for him and I will keep fighting for him,” she says.

Those words capture the reality behind haemophilia statistics.

Behind every diagnosis is a family negotiating fear, cost, distance, stigma and uncertainty.

Behind every child who needs a clotting factor is a caregiver trying to get them to hospital before a bleeding episode becomes life-changing.

But the story began much earlier — with a mother she watched bleed without understanding why, four siblings whose deaths remained unexplained, and her own years of abnormal bleeding that no one recognized as a possible warning sign.

And she could not have known that the son who once walked alongside other children would one day need a wheelchair after repeated bleeding and difficulty accessing the factor treatment he needed.

But now she knows. And she has turned that painful knowledge into a reason to speak.

Her story is ultimately a call for women to recognize abnormal bleeding, for families to understand inherited bleeding disorders, for health workers to recognize the signs and for society to stop blaming mothers for conditions they never chose.

Because for mothers like Chimoli, haemophilia is not simply a disease. It is a lifelong fight. And she is still fighting.