The genetic disorder Sanfilippo syndrome, also known as mucopolysaccharidosis type III, is so rare that most physicians are unfamiliar with it. So, it is not surprising that it may have taken years for your child to receive an accurate diagnosis.
Learning the cause of your child’s symptoms often puts you on a path to disease management, treatment, or other services. Still, now that you know, you likely will experience emotions that range from relief to shock. It’s normal to feel devastated and go through the stages of grief.
Following is an overview of what you can expect and how to cope.
Loss of what you’d envisioned
Parents who are expecting a baby naturally have dreams for their child, perhaps including what he or she will look like, what profession they will choose, or how they will perform academically. A diagnosis of Sanfilippo syndrome or another disease can cause grief over the loss of the child you imagined.
You may experience a period of denial that your child has a severe disability. But, as a normal and necessary part of grief, such denial may be helpful in that it can give you time to summon the strength and support to deal with this new situation.
When you consider the changes to your family life that such a diagnosis can bring, it’s normal to feel panic or anxiety. But these emotions can be helpful because they help you gather and focus the energy necessary to adapt.
Acknowledging anxiety and fear of the unknown can be helpful to families during this stage. You have a right to such feelings.
Anger is a very common symptom of grief. You may be angry at those who diagnosed your child, or you may become irritable with family members. Insignificant events suddenly may seem important and disastrous.
Remember that anger may be caused by feelings of being powerless or losing control.
You may experience guilt, an emotion that makes people think about things they have done in their lives that they perceive as bad. Guilt often takes the form of questions such as “Why me?” or “What did I do to deserve this?” It may be hard for parents to accept that some things have no explanation. Families should be permitted to express such feelings.
Depression is another normal part of grief. Now that your child has received a diagnosis, you should talk about your depressed feelings with a counselor or other healthcare professional.
As a parent, you may become fearful that the depth of your hurt is so great that you will be unable to bond with your child — or others. But feeling and sharing such fears and emotions can help parents find the inner strength and courage to begin to bond with and love their child.
In this phase, parents start to notice the ways — big and small — in which their child is like other children. Emotions become less intense, and the family starts to find delight in the child. They also start to develop new ways of enjoying each other.
Expect that major events or changes such as the first day at school, holidays, family gatherings, or your child’s birthday, can trigger lingering feelings of loss.
There may be times when you are overwhelmed by the breadth of your child’s healthcare, or by strained family dynamics.
It’s important to have hope during these times and gather support from organizations such as the National MPS Society.
Last updated: Oct. 27, 2020
Sanfilippo Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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