All the Puzzle Pieces Fit Together

How our family built an integrated SMA support community - Maude

None of my family members have experienced a rare medical condition. They did not even know that they could be carriers of a genetic disease. As a result, my immediate family had a very difficult time dealing with Jasmin’s diagnosis.

They needed time to accept that my child was going to be different and that his life would not be like the lives of other children. Over time, they had the opportunity to interact with him, to see that he understands what is going on around him and that he is lively and very alert. From that point on, they were able to become more comfortable with SMA.

Outside our family bubble, the reactions of others were even more difficult to accept. SMA is so rare and such a taboo topic that instead of wanting to know more about it, people keep their distance out of embarrassment or discomfort. I think that there is a lack of education on how to raise the subject and broach a discussion. Personally, I would prefer to have people ask me questions about the condition rather than ignore it. The more someone knows about SMA, the more normalized it becomes to them.

For all these reasons, it is difficult to find the right person prepared to provide support to someone with SMA and who truly wants to help. Plus, people are very busy.

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“I prefer to give people the time to offer to help on their own as opposed to making them feel obligated to help us. Sometimes, a little thing like asking if we slept well is a nice gesture.”

One of those people is my sister. She comes over twice a week to lend a hand. She had to deal with her own stress and face the unknown in learning how to get to know her nephew. Today, she knows exactly what to do to care for him. It is even more moving for me that this help comes from a family member and not from a stranger.

Support from relatives is also helpful to other members of the household, especially when there are other children in the family. My husband and mother-in-law spend a lot of time with Ethan, my eldest son, especially since my mother-in-law is less comfortable with Jasmin’s devices. So, while she may primarily tend to Ethan, it does not prevent her from spending time playing with Jasmin.

It pains me to think that I cannot give my eldest son the same attention. His grandmother, however, is able to shower him with motherly love—the type of love and attention I cannot give him because I have to look after Jasmin.

Another equally important type of support comes from parent groups on social networking sites. For me, this type of support is essential. It’s a lifeline of sorts because these parents share many of the same concerns at the same time, they are equipped to offer solutions.

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“I have connected with the parents of older children who can answer my questions, relieve my anxiety or encourage me to consult a doctor or take my son to the hospital when necessary.”

Outside help is available to us through a social worker who serves as a central access point in finding solutions for us as a family and a couple. She helps me to make decisions and to navigate the bureaucracy so that my family can gain access to social services.

This multidisciplinary approach—psychological, medical, social, financial and other forms of support—is invaluable to persons with a rare condition and to their families.