Sajjona: Trisomy 18 Thriver

Sajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was diagnosed with Trisomy 18, also known as Edwards syndrome. When they gave us her diagnosis they told us, “she does not have Down syndrome, she has trisomy 18. Do you know what that is?” (in a cold tone). She is “incompatible with life. If you are lucky she will live two weeks.”

A rocky start

We were devastated and did not want our beautiful little girl to die. We prayed to God. They tried to send her home on hospice, but we told them “ no.” We were going to advocate for her life. We had faith and hope even though we were in despair. Our whole world was shattered. She spent 52 days in the NICU and then got to go home, yet all her stuff was shoved in bags. There would be no NICU graduation and no clapping. This was the baby that they were sending home to die.

Defying the odds

At about a year old Sajjona contracted RSV and almost died. Yet, she survived and 1 year turned 2 and 2 turned 3..the years have passed and she is now a 6 1/2 year old little girl. Yes, there are challenges, but she has surpassed the doctor's expectations. She has a full, rich life full of glamping trips with her family, been on top of Cannon Mountain in NH, goes to the ocean, attends church, homeschool club, and 4H club. She has friends and is a part of a community.

Continuing to thrive

Sajjona may need to do things in her own time and differently but she has accomplished so much! She walks in a gait trainer, jumps in a jumper, walks with support, ands is learning to take steps. Yet, most of all she is teaching the world that no matter what your diagnosis you are born with, you are an individual with personal strengths and weaknesses that one can learn to overcome. Sajjona is a blessing and spreads hope and inspiration to all those she meets.