3 Year Old Fighter Shares Her Story
Tell us a little bit about your family and your connection to muscular dystrophy.
Mila was diagnosed with SMA (Spinal Muscular Atrophy) type 2 when she was 9 months old. Since diagnosis, Mila has participated in 2 clinical trials and received 3 different SMA drugs. She has been fighting back ever since her first treatment, right after her 1st birthday. She is now almost 3 ½ and still slowly regaining skills she lost as an infant.
Mila is an incredibly strong little girl with a positive outlook. She has endured more and fought harder than most will in a lifetime. Through it all, she is incredibly happy, completely hilarious, and super sassy.
Describe some of your experiences with MDFF events and services.
Our first experience with MDFF was the 2018 Holiday Party. It was so overwhelming and so rewarding to see how much people just wanted Mila to be happy. Mila was only 2 but loved firefighter Joe. We left that event with a stroller full of new toys. My favorite memory was returning for the 2019 Holiday Party and her immediately taking to Joe again. This event has such a happy vibe. It’s amazing to be able to share this experience with her.
We also met a lot of new people, families, and other vendors at the MDFF Expo 2019. The following year, I had the privilege of being asked to be on a 2020 Expo panel. Mila has a very unique story that I’m happy to share. I feel strongly about giving back and advocating for all those impacted with MD and SMA.
What would you tell someone else about MDFF?
Having a child with SMA can quickly get overwhelming and lonely. Adding MDFF to Mila’s “village” has been a breath of fresh air. You all show so much love and support to our family, and I couldn’t be more thankful for all of you.
MDFF is an amazing resource for everyone with MD. The mission of the organization is to simply make life a little easier for all of us. Being a mother of a young child trying to navigate this life is scary. MDFF is a place where people “get it” and just want to help without judgement. They all are an invaluable resource.
What advice do you have for a family who may just be receiving a diagnosis for themselves or a loved one?
Year 1 is the hardest. Things will become more normal… A new normal, but your normal.
Allow yourself to grieve. You are finding out all the hopes and dreams you had for you and your child are being torn away from you in an instant. It’s hard. It’s so hard but, you will create new dreams. Your lives now have a new purpose. Embrace your new purpose because even though it will be the most challenging, it will also be the most rewarding.
Love hard. Lean into each other. Celebrate every victory no matter how small.