When individuals or parents receive the diagnosis of hydrocephalus, they immediately turn to finding information about the condition, how it is treated, and how it will impact their lives. When Tammy Knight’s son was born 29 years ago, she found herself in need of information. Her desire to educate herself and then to help others, led her to become the support group leader for our Colorado Community Support Network. She now lives in Salt Lake City, where she started and leads our Utah Community Support Network. As we continue our interview series commemorating our 30th anniversary, Tammy sits down with Jennifer Bechard, our Education Manager, to reflect back on her years of service to the hydrocephalus community and the value of trusted information, like that produced by the Hydrocephalus Association, that supports individuals and families on their journey.
HA: How did you find the Hydrocephalus Association (HA) and why did you decide to volunteer?
TAMMY: I found the Hydrocephalus Association by looking for information that was available online. I was not aware of anything when my son was little. I decided that I wanted to help the cause. So many families are affected by this, and so many really don’t even know what it is.
HA: You previously led a support group in Denver, CO, what inspired you or made you want to start a community network in Salt Lake City, UT?
TAMMY: I felt like it helped individuals in Denver and I realized the need for a group in Salt Lake City. I actually just wanted to be involved somehow here in the SLC area. There was a need for a support group and I wanted to be a part of it to help other families dealing with hydrocephalus.
HA: What do you think HA’s support groups do for the hydrocephalus community?
TAMMY: HA’s support groups can be a great help to families. Knowing that there is support from families that are going through the same issues can help a great deal. Families can provide each other with an emotional network and give each other the help they need with REAL experiences to share.
HA: Has HA made an impact on your life?
TAMMY: Yes, HA has made an impact in my life. When our son was small, I did not really know what to look for, did not realize what was available. He is 29 years old now. As time went on I thought, “If I had something like this when he was younger, it would have been so helpful.” I can see that families impacted with any kind of health issue need support from others who are in a similar situation. HA is a wonderful organization. It is a place for families who need personal support and resources.
HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?
TAMMY: I am not sure I can pinpoint one thing, but I think the many connected support efforts – the National Conferences on Hydrocephalus, the WALK events, and the help they offer online. ALL of the information they offer is so valuable. I can see that the HA is always improving, growing and willing to do anything they can to help the “individual.”
HA: What message do you have for individuals living with hydrocephalus? As a mother of a child with hydrocephalus, what message do you have for other parents?
TAMMY: As a mother of a child with hydrocephalus, I am still learning the affects the condition can have on him. It seems like there is still a lot to learn. I learned early on that we, as his parents, were his only advocates in school. We had to really fight for the things he needed in order to do well. I learned that each child with hydrocephalus has his or her own challenges, symptoms or shunt problems, and that I had to listen to my son first and how he was feeling. I also think there are still some unknown questions about hydrocephalus and I hope to see more research about improving shunts, more knowledge to give parents, etc.