Juliet Soila Sankale
Kenya
My journey into the world of maternal and child health, particularly the challenges faced by mothers of children with special needs and premature babies, is deeply personal. I am a mother to a beautiful child born prematurely whose developmental milestones have been delayed over the last five years. Every day has been an intricate balance of love, worry, and the relentless pursuit of solutions to help my child thrive. But through it all, I have learned just how much more needs to be done for mothers like me.
In my hometown of Narok County and across Kenya, the reality for mothers of children with disabilities and premature babies is harsh. As a young woman leader, I have seen firsthand the emotional toll that caring for a child with special needs can have on a mother. From the physical exhaustion of sleepless nights to the financial strain of medical bills and therapy costs, many mothers are overwhelmed and isolated. I have walked this path, and these experiences fuel my passion for advocating for systemic change.
The emotional and social stigma surrounding children with disabilities in Kenya is deeply entrenched. Mothers often bear this stigma alone, in silence. Society tends to label children with special needs as a “burden,” as if their existence is a misfortune, not a blessing. For years, I, too, struggled with this stigma, feeling alone in my battles, unsure of where to turn for support. However, I realised that these experiences have shaped me into someone who is called to lead. I believe it is not just my personal story but the stories of countless mothers across Kenya that must be shared and heard.
As I now stand on the precipice of a political career, I am compelled to amplify the voices of mothers of children with special needs. This is why I am aspiring to run for a parliamentary seat in 2027, to champion the causes that matter most to these mothers—the need for tax relief for parents with special children, better access to medical care, affordable educational support, and a reduction in the cost of raising a child with special needs. I am ready to serve these mothers and push for the policies that will make a real difference in their lives.
The challenges faced by mothers of children with special needs and premature babies are not isolated. They are a reflection of broader societal issues that affect us all. When these mothers suffer, society suffers. These mothers' struggles are not just individual burdens but communal struggles. If we ignore their pain, we are undermining the potential of our society as a whole.
Economically, many families are on the brink of ruin. The cost of medical treatments, therapies, and ongoing care for children with special needs can be overwhelming. Some mothers, like myself, are forced to leave their jobs to care for their children full-time, putting additional strain on family finances. This cycle of economic hardship not only affects individual families but also communities. Fewer resources are available for other needs, hindering overall community growth.
The lack of adequate healthcare services for children with disabilities, especially in rural areas like Narok, compounds the problem. Neonatal intensive care units (NICUs) are few and far between, and rehabilitation services are often non-existent. Without the right support, children with special needs struggle to reach their full potential, and mothers are left to fend for themselves.
Many people do not understand that this issue is not confined to one family, one county, or one region. We fail as a nation when we fail to support these mothers and children. We cannot afford to leave behind those who are most vulnerable. If we want a stronger, more inclusive society, we must invest in these families because when they thrive, we all thrive.
The time to act is now. While Kenya has made significant strides in improving maternal and child health over the past decades, we cannot afford to overlook the gaps that still exist—especially when it comes to mothers of children with disabilities and premature babies. The maternal healthcare system in Kenya is under significant strain, and for marginalised groups, accessing specialised care remains a challenge.
Despite government programs like the Free Maternal Healthcare Program and the Beyond Zero Campaign, many mothers still face significant barriers to receiving the care they need. Specialised services, such as neonatal intensive care and rehabilitation therapies for children with disabilities, are few and far between. Rural counties like Narok, where I come from, lack the necessary infrastructure to meet the needs of these children. The lack of trained healthcare professionals and the unavailability of equipment further complicate the situation.
This is why addressing the needs of these mothers is not just a matter of charity—it is a matter of national progress. If we fail to address the healthcare and social support needs of mothers of children with disabilities and premature babies, we risk reversing the progress we’ve made as a nation. We cannot claim to be a society that values inclusivity while ignoring the struggles of these mothers. We must do better.
As I look forward to serving in parliament, one of my key priorities will be advocating for investing more resources into healthcare infrastructure, particularly in rural areas. I will also push for policies that make healthcare and support services more accessible and affordable for mothers like me. This is critical, not just for the well-being of these mothers but also for the future of Kenya.
Practical Steps for Change
Mothers like me and those with children living with disabilities are the ones living this reality every day. We know what we need, and it is time for our voices to be heard. Here are the actions that need to be taken to support mothers of children with special needs:
Recognise: We must recognise the crucial role that mothers and caregivers play in the lives of children with disabilities and premature babies. This recognition must go beyond sympathy—it should translate into policies that support these mothers tangibly. These include better healthcare infrastructure, subsidies for medical costs, and more inclusive policies in education and employment.
Reduce: We must reduce these mothers' financial, emotional, and physical burdens. This can be achieved by introducing tax relief for parents with children with special needs, providing financial support for medical treatments and therapies, and creating respite care options to give mothers a break from the demands of caregiving.
Reward: The work mothers of children with special needs do is often invisible and undervalued. We must reward their efforts by recognising caregiving as legitimate labour. This could include flexible working hours for parents, income support programs, and a national conversation around the value of unpaid care work.
Redistribute: The burden of care should not rest solely on mothers. We need to redistribute caregiving responsibilities through community programs, peer support networks, and the involvement of healthcare professionals. Empowering mothers to become advocates for their children and communities is essential, as they are the ones who understand the needs best.
A Shared Vision for the Future
As I work toward a leadership role in parliament, I will focus on advocating for policies that make life easier for mothers of children with special needs. We must act now for our children, families, and nation. Together, we can create a Kenya where every child, no matter their circumstances, has the opportunity to thrive. The time to act is now, and I am ready to lead that change.