Sibling Support

When a child has a rare disease, it impacts the whole family. Siblings have deep feelings, big questions, and serious concerns. They often feel different and isolated from their friends who just don’t understand. Cure MLD is here to support all members of the family and provide help for healthy siblings as they cope with their unique experience.

You have one of the most important jobs in the whole world, you get to be a sibling of someone with MLD. Being a sibling for a rare disease will increase your responsibility for your sibling. Even with MLD, your sibling is still your sibling. You will still be able to play with them and have fun with them. Your sibling really needs you and you have one of the most important roles in the family!

It might seem unfair that your sibling gets so much attention or that they cannot do all of the things that you can do. There are a lot of ways that you can interact with your rare disease sibling that are perfect just for them and their needs.

Having a sibling with a rare disease can bring up a lot of questions and be confusing. You might have your own concerns about what is happening to your sibling and it might be hard to understand the explanations from your parents, doctors, or other supports in your life. We have listed out some common questions and feelings you may have about this diagnosis and what it means for your family. Read this alone or with a family member, and know that we are here to help you.

Common Questions

What is metachromatic leukodystrophy (MLD)? The disease called metachromatic leukodystrophy (MLD) happens when a person’s genes are different from most people. A person with MLD usually has walking problems or even has a hard time communicating. They cannot get rid of the bad stuff in their bodies, called sulfatides, that limits their ability to walk, talk, and sometimes impacts their behavior. Because of this, your sibling will have extra doctors, medical equipment, medicine, and lots of extra attention. But remember that your family loves you just as much as your sibling!

What are genes? Every person in the world is born with genes. Genes are what give you the color of your eyes, your hair, and they even determine if you are going to be tall or short! Everyone has genes. Genes can make us healthy and strong or in rare cases be a cause of disease. There are several different kinds of diseases that result from genes that don’t work properly, like metachromatic leukodystrophy (MLD) that your sibling has.

Can I catch it? MLD is not contagious and it is very different from a cold or flu. It is something that your sibling was just born with, just like their hair color.

What can I do with my sibling with MLD? Your sibling with MLD may look and act differently, or not be able to do the same things that you can do. You can still play and have fun with them, it just may look different. Some fun ways to interact with your sibling are: - Talking or reading to them - Listening to music or creating playlists with them - Drawing picture or decorating their medical accessories - Making up new games - Watching shows or movies with them

How should I explain what my sibling has to my friends? It all depends on what you want to do and what feels right to you. You do not have to tell your friends anything about your sibling and their condition. You can tell some people but not everyone. You can tell everyone too. It is okay to tell and it is okay to not tell. If you decide you want to share, you can share this page to your friends, details that you know about MLD, or even just tell your friends that your sibling is extra special and that they require extra attention. If you feel comfortable with it, you can even introduce your friends to your sibling. Do what is best for you.

I am feeling angry / frustrated / sad / lonely / jealous / hurt because my sibling has a disease. Any feeling that you have toward your sibling is okay. It is hard to have a sibling with a rare disease and it can cause a lot of emotions that can be confusing. It is important that you talk to your parents about your feelings instead of bottling them up or acting out. If you don’t want to talk to your parents about it, reach out to a trusted teacher or adult instead.

My parents give my sibling a lot of attention, how can I make sure I get attention too? If you feel like you need more attention, talk to your parents about spending more time together, one-on-one without your sibling. You deserve and need attention too! Just remind your parents that you want to spend time with them alone too!

How can I help my parents take care of my sibling? It is great to help take care of your sibling, just remember that you are their sibling first and can take care of them second. The most important thing is that your sibling knows how much you love them. If you want to help, ask you parents where you can fit in. They may have some ideas, like you picking out clothes for your sibling, keeping them company and comfortable, or even helping with feedings. Your parents should guide you through any care responsibilities!

How can I have space and privacy? Make sure to talk to your parents about privacy and let them know your feelings about having a space that is just for you. You can put a sign on your door saying “privacy please”, shut your door, or communicate to your parents about having alone time.

Where can I meet other siblings who have a rare disease sibling? Sibling support project at https://siblingsupport.org/ Apps for siblings of all ages to connect with other siblings: - Sibnet - Sibteen - Sib20 Reach out if you need help at info@curemld.com

Siblings of a rare disease can be just as impacted as the parents. Rare siblings take on some responsibility for care and support that only increases with age and maturity. We have provide some ideas and supports for your child without MLD.

Build their knowledge and explain what is happening:

It is important to communicate what the diagnosis means to your unaffected child. They can often tell that something is going on, but without the proper communication, there is space for them to feel confused and imagine situations. The sense of confusion and isolation can cause unaffected siblings to act out in a number of ways. At an appropriate level, explain the situation to your child. We have some great resources for children and parents to help explain leukodystrophies and create a foundation of trust below.

Keep connecting:

Make space and time for your child without MLD. This can be any variety of things, from emotional to physical connections. Make time and space for it to be all about them. For example, daily calls, nightly story times, or even making special one-on-one time with your unaffected child can provide a sense of support and comfort for children that yearn for attention from their parents.

Stay consistent, or as consistent as you can:

Try to keep up a regular routine to promote a sense of normalcy for your children. We know that life with MLD can be unpredictable and ever changing, but building space for your unaffected child will help them feel supported and acknowledged. This can be regular mealtimes, bedtimes, or thing that provide a sense of structure.

Let communication go both ways:

Make sure that the unaffected sibling knows and understands that you are available for them. Schedule times to regularly talk and check in and be there when they want to talk. Sharing your own feelings and expressing when you feel an emotion can help validate the emotions that the sibling is feeling. Acknowledge the sibling by asking how they feel, what it is like for them, and how you can help them best.

When the sibling takes on more caretaking responsibilities, be sure to involve them in the care plan. Recognize their responsibilities as part of the care team, but give them opportunities to be a kid with their sibling.

Expand or start support network:

With the changes that diagnosis brings, the unaffected sibling needs support and adaptations to best help, just like the rest of the family. Improving school support by explaining the situation to school staff can provide a safe space for your child. This will also help explain potential absences, tardiness, and tiredness in class. It will also make the staff more sensitive to worries and issues that your non-MLD child may have.

Additionally, setting up therapy support and mindfulness practices will expand the support system in place for your child. An MLD diagnosis creates an incredible shift in the family dynamic, in expectations of the future, in the life of your unaffected child. Fostering a safe place in therapy and resources to help your child regroup and relax will help promote positive mental health. Some simple mindfulness techniques could be coloring, journaling, yoga, art therapy, breathing, and guided meditation.

Engage with those who know:

Talk and reach out to your fellow MLD community members about what has worked for them. Connecting with other families will also provide a space for your unaffected child to meet other unaffected MLD children who understand. Engage in family centered conferences or reach out to nearby families and set up a meeting.

I am a caregiver or an adult patient with MLD and I would like to speak to other adult patients/caregivers.

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Resources