I want you to know...

To all the SMA kids growing up now, here are some things that I want you to know. I want to tell you some things that have helped me to live a great life despite SMA. I’m going to give you some bullet points that I hope help you live the extraordinary life I know is waiting for you.

• Don’t let your SMA define you. It will impact your daily life, yes, but don’t let it be all you are. You are smart, beautiful, talented, and sassy already at age two. I know that you have so much more inside of you that is just yearning to get out. Yes, you HAVE Spinal Muscular Atrophy but you don’t have to BE Spinal Muscular Atrophy.
• Your abilities are far greater than your disabilities. You can do so much more than you cannot do. Sometimes it may seem like your limitations are greater but I know that the challenges you have and will face will make you a stronger person. You will get frustrated by your uniqueness from time to time but remember that we are all talented in different areas. You may not be able to walk but I know that you are so smart. You can teach the world so much. With a bit of imagination and some help from your family and friends, you can master just about any activity. Embrace your differences, for they are what will keep you going!
• Never give up! Your mother and father have given you a fantastic starting point by loving you unconditionally and giving you the best chance to succeed in life, both physically and emotionally. But you know that a lot of this is up to you and your tenacity. You have so many choices to make now and in the future. You can decide, every day, whether or not to be limited by what you can’t do. If you can, be excited by the potential of each and every day. You have so much to show people, don’t give up!

Thank you for letting me be a small part of your life. I can’t wait to see all the things you have to teach us.

Newly Diagnosed Families

I was recently asked how we deal with talking to newly diagnosed families. This was my response

We come into contact with a lot of newly diagnosed families because of B4SMA. It can be a lot of work, emotionally and physically, to help families get the information they need to make the right decisions for their families. First of all, for your own mental health, remember that you can only help people who want to be helped. Offer up your story, what you know to have been helpful for your family. Give them links to websites that you got your helpful information from (FSMA, SCF, GSF, FightSMA, MFMF, etc). Be sure to share support/supply organizations as well (FSMA Care packages, Cole's Quilts, B4SMA, etc.). Mostly, from personal experience, be prepared for the family not to agree with the path you chose for your family. Should they decide, for example, to use palliative care instead of NIV offer to give them contact information to families who have chosen similar paths. Do not push your beliefs but share openly your experiences, both good and bad. It is not always easy to help but if you are prepared for various situations ,you will be fine.