A Note to Siblings

This resource was made to help siblings of KAND patients and their parents understand KAND and how it might impact siblings. Some parents may decide to share this resource with KAND siblings, while others might borrow language or ideas from this resource to support their own conversation with KAND siblings. This resource is intended to serve pre-teens and teens, but parents should use their own judgment when deciding what information to share and how it might be best to discuss KAND in their specific situation. Throughout this resource, we’ll use the term “parents” to represent parents, grandparents, guardians or other caregivers of KAND patients and siblings.

Having a sibling with KIF1A Associated Neurological Disorder (called KAND for short) can be a scary and confusing experience. Your sibling may have certain medical needs that require a lot of changes, which might take some time to get used to. It’s okay and perfectly normal to experience different emotions as you adjust and learn more about your sibling’s condition.

Just remember: you are never alone.

Everything you struggle with is valid, so don’t feel embarrassed or scared to talk to someone about it. Don’t be afraid to reach out to a parent, a therapist, or a friend and let them know how you are feeling. Keeping a journal may also be helpful to sort through your thoughts and understand your emotions.

Although yours is a unique experience, there are other people who you can talk to who understand what you are going through. See the Resource Section of this page for ideas to review with your parents or a trusted adult.

Medical needs and its effect on family and life

Your sibling may have different medical needs. This means that your parents might have to provide additional support for your sibling at home for their health and safety, or even spend time away from home for various hospital visits. It is okay to feel angry or jealous over the situation, and it is important to recognize what you are feeling and communicate with your parents. Although a lot of time and attention may be dedicated to your sibling, this does not invalidate your own struggles and emotions; you are just as important. Every problem you face, every achievement, test score, and sport event are valuable. If you feel neglected, angry or sad, tell your parents. They are also learning throughout this experience, and they need to know how you are feeling in order to figure out the best situation for everyone in the family. For example, maybe you can talk about setting up time with your parents that can be focused on you, or for a fun activity.

Along with attention, your sibling’s medical needs may have a large influence on family life. You may have to be careful with sickness and germs, especially during and after COVID-19. Your family may also spend more time divided, and that might make family activities and vacations more complicated. If your sibling cannot attend certain events, then a parent may often need to stay home with them while the rest of the family goes out. Your sibling may also have hospital or therapy visits that consume a lot of time. Your sibling’s condition might bring a lot of change, and the adjustment may be difficult. Though you may feel angry, upset or frustrated, don’t forget you are not alone in this experience. Reaching out for support may help you address these feelings.

Ask questions

It is also important to ask questions. You may be confused about what is happening to your sibling and what this means for you and your family. Not knowing what is happening can be scary. It is easy to jump to conclusions before knowing all of the information. Instead of unnecessarily worrying yourself, ask what is happening, and let your parents or someone you trust know what is concerning you.

Your parents may not always have answers to your questions. They are learning throughout this process too, and there is still more to learn about what your sibling is struggling with. However, remember the KAND community includes parents and siblings just like you, and a team of scientists and doctors who are working hard to find answers and improve the lives of KAND families.

Symptoms

You may notice your sibling experiencing various symptoms that may prevent him/her from activities that other children their age can participate in, or can delay development of skills, such as crawling. For example, they may have trouble with movement, balance, speech or vision. They may also experience tremors, which are involuntary shaking or movement of different parts of their body.

Your sibling may also have seizures. Seizures are the result of a communication issue in the brain. Your brain is responsible for a lot, including your ability to move, think, or eat. This requires a lot of communication and messages/signals within the brain and between the brain and the rest of the body. Sometimes there is an issue with the signals in your brain, and this can cause seizures.

Seizures come in many different forms such as stiff muscles, shaking, drooling, or sudden falls. They may also cause blank stares or spacing out for a few minutes. Seizures may be scary to watch, but try not to panic when your sibling has one. Talk to your parents about what to do when your sibling has a seizure.

You might be confused why your sibling has KAND and you do not. KAND is caused by a variation or accidental change in your sibling’s DNA. DNA is like the instruction book that makes everything in your body function, and determines who you are. When there is a specific change in the DNA like with KAND, it causes your brain to have trouble performing all of its normal functions, which is why your sibling is experiencing different symptoms. KAND is not something you can catch from your sibling, it is something you are born with.

Guilt

It is scary to witness different symptoms and frustrating to watch someone you love struggle to accomplish what others take for granted, and which you can do with much more ease. You may feel guilty for not having KAND or the same struggles as your sibling. This is normal and understandable. It is okay to have bad days. You don’t need to fight your feelings. Sometimes when you are having a bad day, it helps to simply recognize that it is one of those days instead of getting frustrated over the fact that you are having a gloomy day. However, although it is okay to feel and understand your guilt, also know that you should not feel guilty. You did not cause your sibling to get KAND. The situation was completely out of anyone’s control.

You may also feel guilty about complaining or having your own problems. However, your sibling’s issues do not invalidate what you go through and struggle with. Whether you are having trouble with friends, academics, or life in general, everything you experience is valid, and although different than the struggles your sibling faces, just as important and real. The challenges you and your sibling face are different, but both are important and worth talking about and addressing.

Due to your sibling’s condition, you may have to take on more responsibilities or “grow up” quicker than your peers. You may feel pressure to be the “perfect” sibling and help your siblings and parents. This can put a lot of pressure on you. However, nobody is perfect, and don’t forget, you are not an adult yet either. It is okay to get mad or frustrated at your sibling, and it is important to be open about it. Speaking your mind and letting your parents, a therapist, your journal, or someone you trust know how you are feeling will relieve a lot of pressure and stress. You should also make sure you have time for yourself where you can relax, enjoy hobbies, sports, and time with friends. If you want to help your sibling, you must help yourself first too; you cannot pour from an empty cup.

Questions and school

Although you know how special your sibling is, other kids at school may not know about or understand your sibling’s condition. They may ask questions, and it is a good idea to talk to your parents and figure out what to say in return. You may even face teasing from your peers. Let your parents and guidance counselor know if this happens and persists.

If someone teases you, it is more of a reflection on that person than yourself. Someone may use hurtful words or actions to guard themselves from their own insecurities or lack of understanding. They may not understand the consequences their words or actions have on others. If someone makes a passing comment or teases you, try not to let it upset you. However, words, especially repeated comments, can be hurtful, so make sure you let your parents, teacher, or guidance counselor know.

It is understandable if your peers’ comments make you feel resentment toward your sibling. Just remember how lucky you are to have your sibling, and how much you love them. Siblings are like built in friends, and they are a very special part of life. However, it is important to talk about how you are feeling. Bottling up your feelings will only make them grow over time. Talking and saying your thoughts and feelings out loud is incredibly helpful, and it can help relieve stress and also help you sort through your emotions. When you don’t write it down or talk about it, it is very easy to misdirect your anger or to not fully understand what the issue is. Being open and honest is incredibly important for your wellbeing and relationships with others.

On the flip side, hurtful comments from others might also make you feel protective of your sibling and angry at the teasing. Although it is very frustrating and your peers can be rude, try to remain calm. You know and love your sibling, and you know how lucky you are to have her/him. Talk to your parents about how you should react to comments, and maybe plan out something to say both internally and to the person so that you are not caught off guard. If you feel uncomfortable, you can always walk away from the conversation.

You might also be embarrassed to invite friends to your home. This is okay. However, if someone judges you or teases you because of your sibling, ask yourself if you want to spend time with someone who would judge you or your sibling for KAND. Friends are an important and influential part of life, and you deserve to surround yourself with supportive and caring people.

Degeneration

KAND does not affect any two children the same way. One kid may not need an assistive device to walk, while another kid may use a wheelchair to get around. Another kid might need help with sitting up or even eating. While scientists are working hard to learn more about KAND, we do know that KAND symptoms can change over time. It is a degenerative disorder with a “progressive” course. Progressive means that over time, your sibling’s condition might change or get worse and they may struggle to do what they once could. As a sibling you may feel scared, powerless, or angry. This is understandable, and the feelings of powerlessness and fear can be consuming and distressing. However, you are not alone. Do not struggle through these emotions alone. Instead talk to your parents, someone you trust, or reach out to a sibling support group.

Just remember, even though KAND can be scary and uncertain, there is a dedicated community of parents, doctors, and researchers working tirelessly to find a treatment for your sibling. In the last year alone, the KIF1A community has made great strides toward understanding KAND. The scientific community continues to learn more about DNA, the brain, and genetic disorders. With new and improving technology, a dedicated team, and a community of rare disorders, now more than ever, there is hope that a treatment can be found. Love and support your sibling and try not to dwell on what is out of your control. Having a sibling is a special part of life, so don’t forget to give your superhero a hug or a high-five today.

Talk

The most important thing to do is to be open about how you are feeling. This will help your parents figure out how to set up a routine that benefits everyone in the family, and it will help you understand the source of your emotions and how to adjust yourself. Bottling up your feelings will only make them worsen over time. Although it can be scary to be honest and put yourself out there, being open will benefit you, your family, and your sibling. However, most importantly, it will help you feel better and help you be more in tune with yourself and your emotions.

Although being a sibling of KAND can feel very isolating, there are thousands of other siblings who can understand your situation. It is important to remember that you are not alone. It might be beneficial to join sibling support groups where you can connect with other people who might share similar experiences and situations. Ask your parents to take a look at the Resource Section of this page for some ideas.

Positives

Although there are difficulties that come with having a sibling with KAND, there are also so many positives. First of all, you get to know and love your sibling. Even though you may fight, your brother/sister will be your constant friend and companion. There is also so much to learn from them. From watching your parents and being with your sibling you will learn, among other things, about love, cooperation, empathy, maturity, resilience, and responsibility. You will learn to be more accepting and compassionate of others, and you will quickly learn that KAND and other disabilities or differences do not define people. Although you might not realize it, your home environment and the communities that you are a part of will influence you as you grow up and learn more about yourself and the world. People learn a lot from the example others set. Watching your parents care for your sibling, or the team of researchers and parents work tirelessly to help you and your sibling will have an effect on you. For example, you may mature faster than others your age, or it can even influence your future career path.

Having a sibling with KAND is a unique experience. It will have its ups and downs, but don’t forget how much you love to play with your sibling, make them laugh or even just hug them. Your brother/sister loves you very much, and always remember, you are a superhero too.

If you have any questions for KIF1A.ORG, email impact@kif1a.org. We’re here to help.

Online Resources for Siblings

Sibshops: Support groups for siblings of children with disabilities.
Special Needs Siblings: a unique non-profit with a global vision to raise awareness, support, and resources for siblings of disabled individuals one family at a time. Check out their Instagram page too.
Sibling Leadership Network: The mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
Sibs: Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

Books for Siblings:

Online Resources for Parents:

Coping Space: An organization that supports families coping with life-changing illness, Coping Space has a dedicated resource section for parents to help with siblings.
Courageous Parents Network: Visit their dedicated siblings page for videos, guides and podcasts.

Articles for Parents:

Thank you to KIF1A.ORG’s 2020 Summer Intern Lindsey Christinger for creating this resource for the KIF1A community.