Monday, April 30, 2012

Please help our Mission get noticed!



Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen! 


We have sent out emails to our local News stations, radio stations, Local  Dj's and even two Talk shows! Hopefully someone will read our stories and allow us to spread our mission to the world! Please do your part by helping share our blog and "liking" our Facebook page. We are only a 4 man team but with your help, hope to become a HUGE team!!!

PLEASE, PLEASE HELP US GET NOTICED!!!!


We are trying to build up our Facebook page to gain many more followers so when our 5K benefit comes around, it will be a successful 1st Annual RACE!! Please "like" our page, we need to inform EVERYONE of SMA!!!
Click on the link below and "Like" our page, Very simply and just 2 clicks!

www.facebook.com/BellaBenefit




Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

Sunday, April 29, 2012

Help us out!

 Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!




We are trying to build up our Facebook page to gain many more followers so when our 5K benefit comes around, it will be a successful 1st Annual RACE!! Please "like" our page, we need to inform EVERYONE of SMA!!!
Click on the link below and "Like" our page, Very simply and just 2 clicks!

www.facebook.com/BellaBenefit


Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

Saturday, April 28, 2012

Our Mission!

 Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!




Our Mission to spread the word to the world about this horrible incurable disease:

In an effort to raise awareness and funds for Spinal Muscular Atrophy, our foundation, Bella Benefit has teamed up with Families of Spinal Muscular Atrophy (FSMA)! We are in the process of organizing our first annual 5K run, we couldn't be more excited for our journey ahead. We are in the planning process and would hope to get on the local news to tell our story. We would love to be heard and take our story to the next level to aware everyone and also try to get genetic testing for SMA mandatory for pregnant mothers. The benefit date has been reserved for 9/29/2012 in Arlington, Texas at River Legacy Park !!! PLEASE "LIKE" OUR FACEBOOK PAGE AND SHARE ON YOUR PAGE. Your support is greatly appreciated.

Please visit our Facebook page and help us spread the word:
www.facebook.com/BellaBenefit 


Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

Help us promote!

 Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!




We are in the beginning stages of planning our first annual SMA benefit! We are so excited about making others aware of the existence of the terrible neuromuscular disease that so viciously took our daughters from us. More importantly, we are looking forward to financially aid families who are currently experiencing the devastation of SMA Type 1. Please like and share our page to help promote this important event. Thank you for your support ♥



Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!




Diagnosing Spinal Muscular Atrophy?

Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!

SMA is diagnosed primarily through a blood test, which looks for the presence or absence of the SMN1 gene, in conjunction with a suggestive history and physical examination.

Normally, individuals have two genes called Survival Motor Neuron 1 and 2. In approximately 95% of patients with SMA there is an absence of the SMN gene sequence, which is present in normal individuals. Sometimes the SMN1 gene is not missing, but mutated. The numbers of copies of SMN2, a near identical backup copy of the SMN1 gene, is related to the severity of the disease, but does not reliably predict a specific SMA type in a given individual. SMA type is generally determined from the clinical examination evaluating the child’s degree of weakness and ability to achieve major motor milestones such as sitting independently or walking.

Occasionally, doctors may request muscle biopsy or EMG (electromyography) testing. Since the genetic blood test became available, a muscle biopsy is almost never indicated and is valuable mainly in cases where the blood DNA test is negative.

EMG measures the electrical activity of muscle. Sometimes this test is performed to help distinguish other disorders of nerve or muscle, which can mimic SMA. Small recording electrodes (needles) are inserted into the patient's muscles, usually the arms and thighs, while an electrical pattern is observed and recorded. In addition, a nerve conduction velocity test (NCV) is performed to help assess how well the nerves are functioning in response to an electrical stimulus. Small shocks are repeatedly administered to help assess nerve integrity and function. When performing this test on a child, if at all possible, it should be performed by a doctor experienced in caring for children.

www.fsma.org


 Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

What causes Spinal Muscular Atrophy?

Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!






In order for a child to be affected by SMA, both parents must be carriers of the abnormal gene and both must pass this gene on to their child. Although both parents are carriers the likelihood of a child inheriting the disorder is 25%, or 1 in 4.

An individual with SMA has a missing or mutated gene (SMN1, or survival motor neuron 1) that produces a protein in the body called Survival Motor Neuron (SMN) protein. This protein deficiency has its most severe affect on motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibers to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, without this protein nerve cells may atrophy, shrink and eventually die, resulting in muscle weakness.
As a child with SMA grows their bodies are doubly stressed, first by the decrease in motor neurons and then by the increased demands on the nerve and muscle cells as their bodies grow larger. The resulting muscle atrophy can cause weakness and bone and spinal deformities that may lead to further loss of function, as well as additional compromise of the respiratory (breathing) system.

There are four types of SMA, SMA Type I, II, III, IV. The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.

www.fsma.org




 Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

What is SMA?

Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!




The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

www.fsma.org


 Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!

Addison Bella


 Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!



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

Please share our Blog!

Meet Us!

Don't forget to share our stories by following & forwarding our blog, following us on Twitter, Facebook and Tumblr @ Bellabenefit and Like us on Facebook.com/bellabenefit!  The more people who are aware of SMA, the less babies are born with SMA, together we can make a difference and find a cure! Help us spread our stories and get a routine  prenatal testing for SMA to happen!
Imagine losing your 3 week old daughter to an incurable disease that you had no earthly idea you and your husband even carried the gene! It was a SHOCK and never even heard of Spinal Muscular Atrophy until Miss Addison Bella was born.True story that happened to us all before we were 30.


We are all connected in a very unique way! Hi, we are Valerie & Jose Trevino . This beautiful baby is our very own angels, Addison Bella. We live in the Dallas/Fort Worth area and we are in the process of planning a 5K Walk/Run to raise awareness about SMA and hopefully get Obgyn office to make this genetic testing mandatory for all mothers expecting. Please help us to spread the word!!!




Please share our blog after reading this and help us spread awareness about this horrible incurable disease. No one should ever have go to thru a horrible tragedy like this. We would like the world to know that a genetic testing for this disease should be mandatory to all expecting mothers!