Olivia is such a loving little girl who is also a little spitfire. She may be non-verbal but she knows what she wants and knows how to get it. Her best friend is her big brother Riley. She absolutely adores him. Even though she drives him crazy at times, he is her greatest protector. Olivia has a very large family filled with lots of aunts, uncles, grandparents and cousins who all love and support her. Olivia is non-verbal but loves to talk and tell stories in her own way. It may sound strange, but I know exactly what she's talking about and what she's trying to say. Olivia loves to paint, help me cook, play dress up, play with her babies and dance. She is our little miracle and she brings so much love and laughter to our family.
We have been very blessed with Olivia's health. She has had a few muscle weakness episodes as well as dystonia episodes. She did have 3 seizures that would happen when she was waking up from a nap. Her EEG did not find any seizure activity. As quickly as they appeared, they simply disappeared and she hadn't had one in 3 years. Overall that has been the extent of her symptoms. We go see her cardiologist once a year as well as her genetics doctor. So far we get a clean bill of health.
Olivia didn't walk until she was 3 years old. With a lot of therapy and hard work she now not only walks, but she runs around and it makes my heart so happy that she has that freedom to run around with all her cousins. It just goes to show how strong and determined our TANGO2 children really are.
My hopes and dreams for Olivia are that she is able to accomplish any and everything her little heart desires. Even though she has a disability, I want her to know that she can do anything and everything. It may take a little longer, but it will make her stronger in the end. She is a very determined 4-year-old little girl.
Everyone tells you how much your life changes after you have a child, but no one tells you how drastically your life will change when you have a child with a disability. Especially a extremely rare disease. Your life becomes filled with doctor appointments, medicines, therapy, hospital stays and a constant worry of "what if" but all that worry and stress goes away the minute your little one holds your hand, gives you hugs and kisses or says or signs I LOVE YOU. I hope one day we can find a cure for TANGO2 but until then we will constantly advocate for our children. We will tell stories of our TANGO2 angels. We will teach others love, understanding and acceptance.