Things to remember
- Raising a child with a rare disease or condition may mean waiting for a diagnosis, finding resources, and dealing with uncertainty.
- Seeking help and taking care of yourself can help you overcome challenges and support your child’s development.
- Children with rare diseases and conditions need loving relationships, healthy environments, and opportunities to play to thrive.
- Children with rare diseases and conditions also need expert medical care. You will likely work with many medical and other professionals. There are many support groups that can provide you with information and resources.
Information about parenting a child with a rare disease or condition
Children with rare diseases or conditions need the same things as all other children to grow and thrive: warm and loving relationships, a sense of safety and security, a healthy environment, and the opportunity to play and explore in their own way.
But if you are raising a child with a rare disease or condition, you and your child will have some experiences and needs that other families don’t.
For example, if your child is born with a rare disease or condition, or develops symptoms of such a disease, it can be very distressing at first.
In addition, for many children with rare diseases or conditions, it can take a long time for them to be diagnosed. You may not know for a long time what’s causing your child’s symptoms. Or your child may be misdiagnosed initially.
Whether it’s diagnosed early or late, a diagnosis is a positive one. It means your child can get the specialized medical care, treatment, support and information they need. But when the illness or condition is rare, resources can be harder to find. It can also be expensive.
You may be worried about what your child’s life will be like if they have a rare disease or condition, or a rare condition. Or you may have to adjust your own hopes and dreams for your child.
Also, the day-to-day care of a child with a rare disease or condition can take time and energy. This may mean that you sometimes worry about your relationships with other important people in your life, such as your partner, other children, relatives and friends. Each stage of your child’s life will bring challenges that must be overcome. But with support, you can find ways to make it work for your child and your family.
There are also some things you can do every day to support your child’s development.
Try Early Intervention
Early intervention can make a big difference in your child’s life now and in the future. Your child’s health care team can help you determine what will work best for your child. You can also talk to your NDIA planner, NDIS early childhood partner or local coordinator about early intervention if your child is in the NDIS.
Looking for practical information?
You can get information about raising a child with a rare disease or condition by talking to other parents who have had similar experiences or by joining a rare disease or condition support group. People in these groups can often give you emotional support as well.
Talk to your child
Talk to your child about his or her rare disease or condition at a level that he or she can understand. You may need to explain to your child that they need to do things differently than other children. Or you may have more doctor’s appointments and visits.
Support your child’s mental health and well-being
Good mental health and well-being aids your child’s social, emotional, mental and physical development. You can support your child by being sensitive to their emotions, helping them build positive relationships and live a healthy lifestyle.
Help others understand your child’s rare illness or condition
When adults and children understand their child’s illness or condition, they can interact and play with them more meaningfully. You can ask your child’s specialist or support group for information sheets, or create your own to distribute to teachers, GPs, other parents, etc. For example: “Eli breaks his bones easily, but he can still play catch. You just need to touch his wheelchair, not his body.”
Stand up for your child
Healthcare professionals are the experts on your child’s health and medical care. But you know your child best, so it’s okay to advocate for his needs, especially if you have concerns about his health, development, or well-being.
