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There are many ways you can help children and their families get the care they need.
Learn more about our ranking as the top pediatric hospital here.
At Boston Children's Hospital, we know how devastating a diagnosis of fragile X can be, both for your child and for your whole family. That's why our physicians are focused on family-centered care: From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs, including putting you in touch with other families with a child who has fragile X, and connecting you to community and educational services.
When you call, we'll schedule a time for you and your child to come in for a comprehensive evaluation, so that our specialists can determine the best course of action for your child. Some of these specialists and the ways they can help include:
Families new to the Fragile X Program at Boston Children's are usually scheduled for six hours of evaluation over two days: one-and-a-half hours with the Genetics Program, one-and-a-half hours with the Developmental Medicine Center and three hours with the Occupational Therapy Service.
Your family will meet with a geneticist and a genetic counselor who can answer any questions you have and provide information about fragile X, and if appropriate, we can connect you with other specialists, including:
We can also provide you with ideas on how to manage your child's environment. For example, limiting excessive sensory stimulation may prevent aggressive outbursts and social anxiety.
Shock, denial, fear, anxiety, guilt, sadness, grief and anger are all normal reactions when your child is diagnosed with a condition like fragile X. It's normal and acceptable to go through a range of emotions. Fortunately, there is a lot of help available to you.
Other sources of support include:
Parent to parent: Want to talk with someone whose child has been diagnosed with fragile X? We can often put you in touch with other families who have been through the same experience that you and your child are facing, and
Support groups: We are in contact with all New England fragile X support groups. Support groups can be a great way to share experiences, get advice and remember that you're not in this alone.
Faith-based support: If you and your family find yourself in need of spiritual support, we can connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your treatment experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our For Patients and Families site, you can read all you need to know about:
Many parents of children with fragile X find FRAXA and the National Fragile X Foundation to be great resources.
Caring for a child with fragile X syndrome can feel very stressful at times. It's important to remember that fragile X does not define your life or your family's life. Consider coping strategies such as:
Taking care of other relationships: While you may feel like all your energy is focused on your child with fragile X, be sure to take care of your other family relationships. Communicate with each other but remember that people deal with emotions differently. Allow each other some leeway in how you communicate. Make sure your child's siblings understand his condition, and reassure them with your attention.
Maintaining a sense of normalcy: Although your regular routine may become centered around your child with fragile X, try to keep your life as normal as possible. Continue doing activities that were important to you. Maintaining some sense of normalcy will help your family be in the best mindset to help your child.
Keeping a journal: Keeping a journal of your child's health and medical care can be helpful for both you and your child's medical team, especially if you ever need to change specialists. You can also record your emotions and look back to reflect on how you have managed each phase of the situation.
Researching and learning: Learn everything you can about your child's condition and the treatments available. Read inspirational stories about parents and children who have been through similar situations.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”