Wednesday, September 3, 2014


I was apprehensive as we drove around looking for the "Step Forward to Cure" walk for Tuberous Sclerosis Complex (TSC) awareness 2 years ago. I hadn't ever participated in a cause like this and I felt uncomfortable attending something that was about an issue MY child had. I have always struggled when I felt like there was too much attention on me. I once received an award at work and I had to go up in front of a small group of about 30 people to accept it. I was so embarrassed about all the nice things that the administrator was saying about me that I could only look down. The truth is, I've avoided attention for as long as I can remember.

For the first 3 years of Nami's life, Salesi and I had really kept to ourselves in our struggles. We had difficulty accepting ANY help, even from family, and we hadn't connected with others that had TSC. (We've since connected with so many, in person and online, and it has been so wonderful.) Our lives in that 3 years revolved around constant doctor visits, tests, therapy, and coping with everything else that TSC had brought us, including multiple life-threatening seizures. 

So, I'm the first to admit that I'm SUPER awkward. We only invited family and a couple friends to this walk. I should have felt completely comfortable, right? Not-so-much. I felt embarrassed even having my family come to something that was about us. Prior to attending, I didn't fully understand the purpose of an event like this. Sure there was fund-raising, and of course it is always good to draw attention to such severe diseases in order to help the public be more aware. What I didn't anticipate is what it would do for US, our family of 4.

Much of my family was able to attend along with a couple of friends. My brother had purchased shirts for the entire bunch and decorated them with one of his friends. My sister bought bandanas and made arm/head bands with Nami's picture on it for everyone to wear. We all met there and put on our matching gear. We got our wristbands and started to walk.

The walk was simple, not a lot of hype like I'd seen about other events in the news that have raised awareness for different causes. Despite this, I was impressed with how many people were there to volunteer. We walked a couple miles around a park and I was surprised at the emotion that came over me. My family had been by our side since the moment of Nami's diagnosis, they had rallied to help during every emergency, yet this was the first time that I truly FELT that we were not alone in our fight with this awful disease.

Salesi had really been annoyed that we were going to spend our Saturday doing this walk and yet there he was, going up to each and every family member and thanking them for attending. He kept saying how nice it felt to be there and be able to feel all the support from so many people. We were both surprised at how good this seemingly small event was for us. We were excited that fun activities and food followed so that these great feelings could continue. This simple walk had a profound effect on me. It was the starting point for us to be able to open up more and start getting better at accepting some desperately needed help.

I guess it's difficult to understand how and why these awareness events are so important unless you are personally connected. At least it had been for me. I wished I had reached out this way to others prior to having Nami...that I had understood what it could do for people living with horrendous conditions. 

This experience helped me realize that in addition to raising money and awareness, events like these bring a much-needed feeling of support to people living in difficult circumstances. I would like to do a better job in bringing awareness to TSC. TSC doesn't draw the attention of other diseases even though it is such a difficult disease to endure. This is a bit surprising to me since research in tuberous sclerosis helps many more than those with TSC (e.g. those with cancer, autism, epilepsy). 

We were so sad to miss the walk last year because we were in New York for Nami's brain surgery, but we are happy to attend again this year. There are walks all over the country, but we will be decked out in Aloha gear and attending the walk on September 27th at Liberty Park in Salt Lake City. 

I would like to invite anyone who would like to bring their families to participate in an event like this to come on over. I would like to invite anyone who has been wanting to volunteer or help some cause to come help with the walk. I would like to invite anyone who or any business that is ALREADY looking for a non-profit, tax-deductible charity to donate to to consider donating. There are many options for donating including donating directly to the walk Step Forward, donating to our team here: NAMInation, or becoming a sponsor.

Here is the information for the walk:

So come on over and enjoy a fun day with the family! It doesn't cost anything to participate. If nothing else, I hope that by using social media, I am able to be a small part of raising awareness to TSC. Thanks for reading!
For further information about our lives with TSC, you can click on the Tuberous Sclerosis tab at the top of the blog page and read some of the posts. My most popular posts are A SLAVE TO TSCJUST CAN'T WRAP MY HEAD AROUND IT - PART I, and STIMMING.

For further information on Tuberous Sclerosis, visit the TSAlliance. This is the amazing organization where all the fund-raising money will go. You will see that this organization is endorsed by Julianne Moore as well as all the fantastic things they do to support families with TSC. They have helped our family so much and I would guess they are one of the best organizations at helping families through living life with a devastating condition. They do such a great job at personally connecting and reaching out to those affected.

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