Alixandrya was born happy and healthy in October of 2020. She is our rainbow baby. When Alixandrya was about 3 months old we noticed that her movement was declining. She went from moving and kicking to almost nothing. We knew something was wrong. When we were able to get her tested, we found out she had the same disease her older sister passed away from. Alixandrya was diagnosed with SMA (Spinal Muscular Atrophy) type 1. Once we received the news, we were put in touch with Cook Children's hospital.
When we were at Cook’s everyone that met Alixandrya immediately fell in love with her. She's a character. Just the way she smiles and laughs draws you in. While we were there, she received her G-button and all her equipment. Apple HMS was there from day one before we left the hospital and have been with us ever since.
Time has flown by since then and things changed again for Alixandrya. In the beginning of 2022, she caught rhinovirus and was put in the hospital. She had to be intubated for a little over a month. We were then flown to Cook Children's hospital and stayed there for 5 months. She spent a total of 6 months in the hospital to start off 2022.
When we finally came home again, Apple HMS was there for us even more. When we came home this time Alixandrya had a tracheostomy, but she didn't let that bother her one bit. The day she got it she was already talking over the trach. The doctors and nurses couldn't believe it. Since then, Alixandrya has only gotten stronger. She gets treatments for her SMA now, receiving Spinraza every 4 months. This medicine has been a miracle for her. She moves more now and is talking more and more, which is something we were told she may never do. Every day is something new and we couldn't be happier. She is now a 2 year old and is definitely in her terrible twos!
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