I want to briefly introduce you to the apple of my eyes, my daughter Natalia. She is the eldest sister to Benjamin and Allan Daniel. She has the most beautiful smile in the world, loves food, and is the most determined person I know. Natalia has taught us many lessons on humility, patience, resilience, kindness, love, sacrifice, and faith. My little girl is a gift from God. We cannot imagine our lives without her.
At the age of four, Nati was diagnosed with ADNP syndrome, a very rare condition from a chromosomal mutation. The ADNP gene is one of the most prevalent single mutated genes within the autism spectrum disorders (ASDs). The ADNP syndrome is estimated to account for 0.17% of all cases of ASD.
Nati was placed in the spectrum at the age of one. She walked for the first time at the age of five, and currently at the age of nine, we are waiting to hear her speak. We have been blessed with an outpouring of love from family, friends and members of our church. Nati has had access to the best specialists in the field and assists an excellent therapeutic school where she gets all the therapies she needs daily. Most importantly, Nati is a happy child. She knows she is loved and is living her best life.
Having a child in the spectrum has made us sensitive to other special families. We were surprised to learn that there are 200,000 new cases per year of ASD in the US alone. There is still a lot we don't know about autism. With this lack of knowledge comes stigma. Access to health providers, diagnosis, and treatment is very limited. It is heart breaking to know that many kids are not as fortunate as Nati. Many kids get diagnosed late which means delayed therapy and different outcomes.
In addition, without the proper support, many families don't thrive due to fatigue, anxiety, and depression. A marriage with a child with special needs is at high risk to end up in divorce.
I am happy to share that I am running the Boston Marathon and raising funds for Dougie's Team for autism. Running Boston has always been a dream of mine. I am so happy to be able to do it and also raise awareness and funds for a cause close to my heart. Lets help others who are not as fortunate as Nati to get the support they need.
God Bless!!