Monthly Feature: Dr. Walaa Regeia

Introducing our Person of the Month: Dr. Walaa Regeia

We are pleased to present this month’s feature: Dr. Walaa Adel Regeia, an emergency physician, certified coach in mental health and personal development, and a mother to a rare child.

Her personal journey has become the driving force behind her mission to support parents and caregivers, equipping them with the tools and strategies they need to find balance, care for themselves, and create a positive environment for their children.

In this interview, Dr. Walaa shares part of her experience and insights on the challenges faced by parents of children with rare diseases, as well as her professional and personal approaches to providing psychological support and practical guidance.

Q: How has your experience as both a mother to a child with a rare disease and as a physician influenced each other?

One of the hardest feelings I carried toward my son was the sense of responsibility. For any parent, it is difficult to cope with treatments when their effects are uncertain. But for me, because I had already seen those possibilities in my work, that knowledge only deepened my anxiety and made the challenge even harder. Over time, however, I came to accept that my role with my son is as his mother, not his doctor, and that is the role I focus on.

As a mother, I almost feel like an “employee” of rare diseases. I search websites and join support groups to find information. I take the initiative to bring my son to specialists. And I try to contribute by connecting doctors with each other, so that more than one physician follows up on his case.

Being so actively engaged in my son’s journey has paid off, thank God. For example, I took him to speech therapy early on. Years later, doctors themselves began recommending that families like mine start speech therapy as soon as possible to maximize its benefits.

Q: What kinds of burdens fall on the shoulders of parents of children with rare diseases?

In our region especially, information remains limited to a small circle of people. Sadly, this means most of the responsibility falls squarely on the parents. There are so many dimensions of care beyond the medical, such as psychological support and integration into society. No single person can carry all of these roles, no matter their background.

At the same time, parents often become overwhelmed by the sheer number of things they must juggle. One of the toughest parts of the journey is that children and families are forced to see so many different doctors. The stress and tension of this process often leave families scattered and lost.

Q: How can the healthcare system better meet the needs of children with rare diseases and their families?

We need reference systems that connect specialists, associations, and families. For example, if one doctor cannot help the patient, they should easily be able to direct them to someone who can.

And when a child is diagnosed, it would make an enormous difference if parents were given a list of medical specialties they should consult, so they do not miss an essential area of care.

Q: Why do parents sometimes feel that their voices are not being heard when it comes to their children’s needs?

One of the most painful aspects is the unequal treatment between children with rare diseases and their peers. Sometimes I struggle to convince doctors that something is wrong with my son, because as his mother, I see the daily changes in him. At times, the response I get is cold, like: “What do you expect? This is your child. He isn’t expected to improve.” But I know he was better just last week, and at the very least, I want his issue to be fairly examined.

It can be devastating when a doctor declares: “There’s no point in trying,” or “nothing will work with him,” or even “your son won’t live past X years.” From my own experience, when everyone becomes convinced that a child will not survive beyond, say, the age of five, that child’s chances of receiving healthcare equal to their peers are dramatically reduced.

I do not say this to blame anyone. I am a doctor myself and I understand the pressures. But it is essential that we show humanity to these children, treat them like any other, and give them a fair chance.

Q: How can medical teams make parents feel that their voices matter in their child’s treatment?

I believe that instead of giving parents a dead end like: “There’s no hope,” we should limit ourselves to presenting the available options and let them decide whether to pursue treatment.

Sadly, because there are no clear reference systems for parents, when one doctor gives up on a child, the journey often ends there even if the parents are eager to try other paths.
Medicine is always advancing. We need to give these children a chance at new treatments, even if there are risks or unknowns. At the very least, if there is hope of easing their suffering, that option should exist.

We also need to strip away the culture of blame and remember that parents are not at fault for their children’s illnesses.

Q: How did you personally reach a stage of hope, both in the treatment journey and in life?

The road to hope is difficult, especially when there is not enough support, particularly from institutions that should be supporting us, such as schools and healthcare systems. Parents truly suffer for their children’s pain, and that suffering can overshadow their entire lives.

Still, it is our responsibility to keep striving for our children, not only in terms of treatment, but also in raising them well. Sadly, some parents make little effort to integrate their kids, and the child ends up isolated at home without any chance to live like others.

Of course, parents must keep realistic expectations. We cannot expect that a few sessions will make a child identical to a healthy peer. But we must keep striving, celebrate progress at their own pace, and accept our child and their illness fully.

Parent groups are invaluable. Realizing we are not alone makes a huge difference. Acceptance of reality does not erase the pain, but it does lighten it.

Q: You mentioned using the phrase “I am rare, I am different” to help children accept themselves. What effect does this kind of affirmation have?

When a child knows he has a rare disease, that he is different, but also that he is just as worthy of care, respect, and love as anyone else, that protects him from so much harm. It shields him from bullying, from stigma, and from the challenges of disability. When a child knows he is loved as he is, that no one could replace him in his family, that is the foundation of a healthy personality.

A child who is filled with appreciation and confidence becomes strong-willed and resilient. If he encounters bullying, it may upset him, but it will not break him. But if we let him be wounded first and only then try to heal, it will be too late, he will already carry psychological scars that may cause him to close off or develop mental health issues.

Even if we believe the child has intellectual delays, we must treat him as if he understands. Many parents are astonished to see how much their children absorb their love, respect, and care, even when it does not appear obvious.

These children may simply communicate differently. For example, a child may struggle to speak, but communicate with us in other ways. That is why it is vital that we listen.

Q: What role can schools and educational institutions play in creating an inclusive environment for these children?

Schools have a vital role in supporting children with rare diseases. There needs to be a system that gives them access to consultation and specialized support when a child’s needs go beyond their expertise.

For example, schools should be equipped to respond to conditions like epilepsy, because every child deserves to get an education in a safe environment.

Teachers also cannot be expected to handle every challenge alone. For example, a teacher with 35 students in the classroom, even with the best intentions, cannot realistically meet every individual need. This is why we strive to improve systems, so that the burden does not fall entirely on one individual.

Q: How can the general public support people with rare diseases and help them integrate more fully into society?

Many people in our society are willing to help, but sometimes they are not equipped with the knowledge or tools to do so. We need to teach children from a young age to respect and care for others, and to be open minded with people who are different.

I have often met children who had no disabled relatives, yet they showed remarkable empathy. They cared for my son’s needs, included him, and accepted him, and this came from the way they were raised. We need to remember that children learn more from our actions than our words.

There is a lot of goodness in society. Every person who stands with us gives us a huge push to keep going.

Q: How do families deal with society not always accepting their children?

We know there will always be people who are unaccepting. But our focus should be on those who are willing to learn, to understand, and to accept.

Acceptance of a child with a rare disease is a collective responsibility. It begins at home: when parents and siblings accept the child, it makes an enormous difference. From there, we can expand the circle.

Q: How has your personal experience motivated you to enter this field and become a voice for patients and families?

My son with a rare disease is not only an inseparable part of my life, he also gives me strength and shapes my character to stand behind him. I have learned so much from him, lessons no book could teach.

Because I have walked this path and learned how to cope with the challenges, thank God, I now strive to help other parents, especially mothers like me. When I coach mothers, they hear my words differently than they would from someone who never lived their struggle, because my understanding comes from lived experience.

Committing myself to community education makes me feel responsible not only toward my son and the mothers I work with, but toward society as a whole and the difference I can make.

At the same time, I am constantly learning from the mothers I coach and from the experiences they share. We have a lively, active community where we draw strength and optimism from one another.

Q: How does the coaching and psychological support you offer help parents of children with rare diseases?

When I first began coaching, I realized many parents also needed psychological therapy. So I trained further to provide those services, so that the parents who came to me would not have to sacrifice more of their time searching for another specialist.

Often, parents go through experiences they cannot share with family or friends, for fear their child will be misunderstood. But with a therapist, they feel relief in expressing themselves freely.

When parents are exhausted and scattered, it is hard for them to know which direction to take. We guide them and give them tools to build a plan tailored to their situation, because every family’s journey is unique.

And when everything becomes overwhelming, we help them step back and see the bigger picture. Even if a mother has no medical background, she has strong instincts about her children’s needs.

Parents are the cornerstone of their children’s future. The illness may never go away, but parents can learn acceptance, understanding, and how to live with it and with the child’s needs

Q: What final message would you like to share with parents of children with rare diseases?

Accepting reality is the hardest stage. Of course, we love our children, but it is never easy to accept a diagnosis. Still, we must release ourselves from blame, because that is not an option before us; our children depend on us. We need to care for ourselves and our health so that we can care for them and provide for them.

Amid all the pressures, we sometimes forget how much progress our children have made, focusing only on what has not been achieved. Yet recognizing their small steps, and our efforts alongside them, gives us the strength to continue.

And finally, when doors close in our faces or when we seek many avenues and find no treatment, it is natural to feel discouraged and tired. We need to recognize the limits of our capacity. If we rely only on ourselves, we will falter and forget. We must surround ourselves with those who understand and support us, and if we cannot find a community to join, then we must create one ourselves.

We thank Dr. Walaa for her time and for sharing these valuable experiences, and we thank you for reading. We look forward to seeing you again with next month’s featured guest.