When Saij was first diagnosed I was angry and upset at God. “Why me? Why him? Why us?” was often the conversation I had with myself. And then I became strong and had faith in knowing that Saij was Babaji’s child before mine. I prayed for the strength to be able to take care of him the way I was meant to care for him.
1. Can you give us a summary of Duchenne and the impact on young boys like Saij?
Duchenne muscular dystrophy (DMD) is a recessive X-linked form of muscular dystrophy, affecting 1 in 3,600 males, which results in muscle degeneration. Duchenne is a terrible disorder. It is degenerative – gets progressively worse over time resulting in loss of strength, function, and independence. Young boys are in a wheelchair by age 8, unable to lift a glass of water by age 13.
2. How has Duchenne transformed your family life?
Duchenne stormed into our lives unexpectedly and turned our world upside down. Through this challenge, however, we learned not to take anything for granted, to enjoy each day to the fullest and to be grateful for the blessings in our lives.
3. How has Duchenne influenced your perspective on living?
I have learned to live in the moment and not worry too much about the future. I have realized that as much as we think we can control things, we really can’t. I have accepted things do not always go the way we think they should go.
4. Has Duchenne shifted or heightened your perspective as a Sikh? How?
When Saij was first diagnosed I was angry and upset at God. “Why me? Why him? Why us?” was often the conversation I had with myself. And then I became strong and had faith in knowing that Saij was Babaji’s child before mine. I prayed for the strength to be able to take care of him the way I was meant to care for him. Today I feel blessed to have a son like him who has shown me purpose and compassion in my life.
5. Has Duchenne shifted how you parent?
Duchenne has certainly shifted how I parent! Saij is a very bright, intuitive and sensitive human being. He is curious and wants to know the how and why of everything. I have begun to understand this is how he operates, and how he lives his life with hope and passion. I realize that just because I’m his mom, I am not meant to have all the answers. He is a huge inspiration to me and a real teacher in my life.
6. What gives Saij energy and joy?
Saij is an assertive, fun-loving, daring and fearless boy filled with enthusiasm for experiencing all that life has to offer. He is instinctively bright and quick. He has a variety of interests including Xbox, Traveling, Movies, Tennis, and Soccer. He has a real passion for simple but flavorful food. His favorites include thin crust pizza, Cholley Bhaturey, Chipotle and Cheese Ravioli. He is usually willing to strike any deal when food is at stake. Most of the time he’s getting into trouble for pushing his way through life, although he occasionally finds strength in doing the right thing – studying hard, swimming, eating right, and being helpful.
7. What has given you the courage and determination to take this journey with Saij?
Soon after the diagnosis, we realized that resisting and denying the condition was completely ineffective. We wanted to do something, and it took a couple of years to organize ourselves where we could contribute in a meaningful way. Our community, consisting of friends, family and including complete strangers were so incredibly supportive that in short order we created a non-profit called ‘Team Saij – Simply The Best’. Here we are today, in our 3rd year of operation having put in excess of half a million dollars to work in therapeutic translational studies. Our mission is to end Duchenne.
Join Team Saij for the Dash For Duchenne on Saturday, May 16th, 2015 from 8:00 AM to 12:00 PM. Promises to be a fun event for the entire family; come join real live super heroes!
Seneca Creek State Park, 11950 Clopper Road Gaithersburg, MD 20878
Please register here: http://teamsaij.org/2015/02/18/dash-for-duchenne-1st-annual-5k-runwalk/
In case you cannot make it to the Duchenne Dash but are moved to support the cause, please visit our website on how to donate: http://teamsaij.org