Addison Bella

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Addison Bella 3/23/2007-4/13/2007

We were so happy when we found out that we are pregnant! We were going to be first time parents and said we would be the best we could possibly be. We went to all the doctors appointments to see out little bean grow! The day we heard the heart beat we both looked at each other said immediately said it was a girl, little did we know she really was a girl! We already had her name picked out and from then on she was "Bella". The entire pregnancy was smooth, not one complication at all, all testing required came out perfect! We were just smooth sailing until we got to meet her! Since this was my first pregnancy, I really didn't know how much a baby in the womb should be moving. Bella would "butterfly" around but I never ever felt a really hard kick or had the organ smashes as the other mothers called it. Every time the doctor would ask me about her movement, I would respond and with,"yes, she's moving". Nothing was every questionable. Well due date was approaching and Addison hadn't turned, she was termed breach so we scheduled a C-section. Day of delivery, we were so excited, we could not see straight! We were so anxious to meet our little Addison Bella.

March 23, 2007: C-Section was done and Bella was taken out, immediately the nurses knew something was wrong with her. She was not breathing and they were having to "bag" Bella. Bella finally came up but she was coming in and out so they had to hook her up to a breathing machine. She was transferred to NICU quickly. Jose and I could not see her for about 4-5 hours later. A neurologist came in to talk with us and tell us that they were going to have to transfer our sweet Bella to Cook Children's hospital for testing. Having a C-Section, I was stuck at the hospital for 3 whole days. We finally got to go into NICU and see her off to Teddy Bear Transport. We all were clueless, doctors, nurses and staff was all clueless. It was devastating to have your 6 hour old baby leave the premises without you. All we could do was pray. A neurologist from Cook Children came to visit us the following morning giving us many options this could be. They said more than likely, Bella was down syndrome, we immediately followed that by answering, as long as she survives, we will accept her in any way and do the best to prepare for all her needs.

Day 3: I was released and we went straight to Cook Children's, Sweet Bella was there at NICU awaiting our visit.  She had already had a ton of testing done including an Electric Neuropathy test, which tests all her nerves to and from her brain. She failed that completely. He explained different options it could be but he really thought it was the rare disease of SMA type 1. About 2 weeks later we received the results that it was in fact Spinal Muscular Atrophy Type 1 and hers was a very severe form, they only gave her up to 6 months to live on life support but we would never be able to bring her home......

April 13, 2007:  Addison was having a really hard time keeping her oxygen levels up and her nurses were having to resuscitate her about 4-6 times that day. Doctors asked us to have a meeting with my entire family and then to go over some things that were happening to little Bella. We were told that her organs were failing, She only had very minimal movement in her arms, hands, legs, feet and toes and it will only continue to get worse from here on out. They told us that babies born with this diseases wind up passing away before they can see their 2nd birthday. Little Addison was already worse off then the statistic. After the 2 hour long meeting, we went back in to be with Bella, She had about 6-7 nurses surrounded her as they were bagging her. I cried my eyes out because it was hurting me to see her that way and every time her machine would beep, all the nurses would charge her area and take care of her leaving all the other babies. I couldn't take seeing her that way and just prayed for help on how to handle it. I was wearing down and seeing my familys eyes read and puffy every single day hurt me. Jose and I just sat right next to here and held hands starring at her and crying for an answer. We told her that we loved her and didn't want her hurting anymore, she would always be in our hearts and we would accept whatever came. We told her that in these 3 short weeks she's already met both of her Great Grandmas, All 4 of her Grandparents, all 14 Great Aunts and 4 Great Uncles, her 3 Aunts and 1 Uncle, her only cousin and of course the amazing staff caring for her especially the Pastor when she was baptized a few days earlier. We told her that we would never ever forget her as long as we lived. After hearing us out we held her hands and minutes later her machines started to beep and many lights started to light up, We felt that was our sign to let her go......

July 23, 2007: I was diagnosed with Non-Hodgkin s Lymphoma stage 1 and went thru 6 months of Chemotherapy, 24 sessions of radiation and 6 months of a maintenance chemotherapy. I went into remission December 2009. My husband and I still very much wanted to be parents so we prayed and tried for a 2nd baby. We got pregnant, I had the genetic testing done at 12 weeks and found out 2 weeks later we were having a boy and he was going to be a carrier of the gene but SMA FREE!!! Our son, Carrson Joseph is now a healthy 20 month old!

Thank you for reading -Jose and Valerie Trevino

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