Bella Benefit. Benefitting Families Affected by SMA: 2012

Thursday, August 2, 2012

Race Flyer!

Wednesday, July 11, 2012

Bella Benefit 5K Race and 1 Mile Fun Run!!

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 would like to raise awareness about Spinal Muscular Atrophy and raise money to help find a cure for this horrible incurable genetic disease! Please Support us and tell everyone in passing about this event, Our Story and Share our Blog::: http://bellabenefit.blogspot.com/

One in every 6,000 babies are born with the disease and one in every 40 people (that’s 7.5 million Americans) carries the gene that causes SMA.

WHEN: 8:00 AM, Saturday, September 29, 2012
(Race day registration at 7:00am)

WHERE: Elm Grove Pavilion, River Legacy Parks, (a beautiful park with a relatively flat & fast, mostly tree-shaded course)
701 NW Green Oaks Blvd. Arlington, TX 76006

Once you enter the park, make your 1st left and we will be at the 2nd pavilion.
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REGISTRATION:
Adult (18 and over): $25.00 / $30.00 Race day
Teen (17-13): $10.00
Youth (12-5): $5.00
Children (4 and under): FREE
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Here is the link to register online if you wish to sign up:

http://www.active.com/event_detail.cfm?event_id=2047525

OR

http://www.fsma.org/Fundraising/EventsCalendar/index.cfm?id=6945&eventRedirect=1&type=1154

OR

Make check payable to: Families of SMA
Mail to: 2425 Big Spring Dr./Fort Worth, Tx 76120

OR

Entry Forms or Walk-in Registration available at: The Runner: 3535 W. Pioneer Pkwy. Arlington, TX 76013 | Phone: 817.461.2281.
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ADWARDS: 5K 1st Overall/Master Male & Female,
Top 3:
8 and under 9-11,12-14,15-19,20-24,25-29,30-34,35-39,40-44,45-49,50-54,55-59,60-64,65-69,70-14,75-79,80-85

Award winners’ names will be submitted to the Fort Worth Star-Telegram (but not to the Dallas Morning News);
Complete results (all finishers) to www.runningintheusa.com etc.

Door Prizes: Just a few (must be present to win)

CONTACT: If you have any questions, please contact Valerie Trevino at valerieroxanne@sbcglobal.net or (972) 742-7473, or Jacqueline Valencia at jacquelinevalencia@yahoo.com or (817) 703-6403. Jeph at www.runningintheusa.com/jeph

If you are interested in becoming a sponsor for this benefit, please let us know. We will appreciate whatever you have to offer to help us out!

SPONSORS:
http://echo-tees.com/
http://www.therunnershop.com/index.php
http://allreadyevents.com/
http://www.vitaminwater.com/

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!

Tuesday, July 3, 2012

It’s BINGO and LOTERIA TIME!

Please join us to help us raise money for our
1st Annual:

BELLA BENEFIT 5K / 1 Mile Fun Run.

It’s BINGO and LOTERIA TIME!

$25 per person or $40 for couple

You will get unlimited games

Pot will be split 50/50

There will also be a spinning prize wheel for prizes to WIN!!

We will be providing Taquitos, Chip and Salsa Bar and Dips!

SATURDAY, JULY 7TH

6-10PM

BETOS MEXICAN RESTAURANT

2530 W INTERSTATE 20

GRAND PRAIRIE, TX

https://www.facebook.com/events/486552254694828//

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!

TRIPLE THREAT 9 SUCCESSFUL BENEFIT

TRIPLE THREAT 9 BENEFIT WAS A HUGE SUCCESS!! THANKS TO CHESTER COX FOR PUTTING THIS EVENT TOGETHER!!!! HAD A BLAST!!!

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!

Monday, June 25, 2012

TRIPLE THREAT 9- RSF 10 yr. Anniversary benefitting Bella's Benefit W/Special Guest Mr. Freeze RSC & DJ.P. RSC Public Event · By Sergio Checo Alvarado and Chester Cox

This is it! The EVENT we have all been waiting for! Please come out and help support a great cause! You will not be disappointed!!!!!!!!!!!

Click on this link below for all details:::

https://www.facebook.com/events/301204696626043/?ref=nf

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!

Tuesday, June 5, 2012

Register for our upcoming 5K!!

WE ARE UP AND RUNNING! Here is the link to our upcoming 5k/ 1 Mile Fun Run! Here you will be able to register, donate and get teams started (if you wish to make a TEAM)!

Hope you all will support us and come out to OUR 1ST ANNUAL 5K BENEFIT!!

http://www.fsma.org/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!

Tuesday, May 22, 2012

TRIPLE THREAT 9- RSF 10 yr. Anniversary benefitting Bella's Benefit W/Special Guest Mr. Freeze RSC & DJ.P. RSC Public Event · By Sergio Checo Alvarado and Chester Cox

THIS IS A BENEFIT TO RAISE MONEY FOR BELLA BENEFIT!!

https://www.facebook.com/events/301204696626043/?ref=nf

10 yrs ago 2 crews collided to become a family. Down 2 Rock and Solid Foundation formed Rock Solid Family. We now want to invite you to our anniversary jam, Triple Threat 9.

Special guest for the evening...
Legendary Rock Steady Crew BBoy Mr. Freeze will join us, spread some knowledge and hit the cyphers.
http://www.mrfreezersc.net/

2012 Master of the Mix winner and Rock Steady Crew Dj
D.J.P will bring nothing but vinyl to the party and rock it like you never have seen before.
http://www.djpmix.com/

3 vs 3 Bboy Battles
$1200
Judges:
Mr. Freeze-Rock Steady Crew

Gypsie One- Vicious Germz/NUE Clothing
Rudy Lara- Diverse Soulz

1 vs 1 Popping Battles
$500
Judges:
Dancing Queen - Rock Solid
Holotype - Animated Mindz
Shadowz

All Styles Battles
$200
Judges:
Leon the Pro- Diverse Soulz
Pawflo Sqwintz- Sole Power/Vicious Germz/TBB
Robert Anthony- Dallas Power House of Dance

On The Wheels of Steel
D.J.P Missouri/RockSteady Crew http://www.djpmix.com/

DJ D.L Oklahoma City/Get Down Alliance http://www.mixcrate.com/deejaydl

DJ SOI Dallas/RSF-Faded Dj's http://www.facebook.com/DJSOi

DJ Mutemor Dallas/RSF-Faded Dj's http://www.facebook.com/mutemor?ref=ts

Sponsors:
LoyalKNG http://loyalkng.com/
Fresh Kaufee http://www.freshkaufee.net/
NUE Clothing
Group Fly http://grpfly.com/
MONSTER ENERGY
www.allreadyevents.com

The event will be a fundraiser for www.bellabenefit.blogspot.com

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!

Monday, May 14, 2012

TRIPLE THREAT 9- RSF 10 yr. Anniversary benefitting Bella's Benefit W/Special Guest Mr. Freeze RSC & DJ.P. RSC

THIS EVENT IS DEDICATED TO BELLA BENEFIT!

10 yrs ago 2 crews collided to become a family. Down 2 Rock and Solid Foundation formed Rock Solid Family. We now want to invite you to our anniversary jam, Triple Threat 9.

Special guest for the evening...
Legendary Rock Steady Crew BBoy Mr. Freeze will join us, spread some knowledge and hit the cyphers.
http://www.mrfreezersc.net/

2012 Master of the Mix winner and Rock Steady Crew Dj
D.J.P will bring nothing but vinyl to the party and rock it like you never have seen before.
http://www.djpmix.com/

3 vs 3 Bboy Battles
$1200
Judges:
Mr. Freeze-Rock Steady Crew
Gypsie One- Vicious Germz/NUE Clothing
Rudy Lara- Diverse Soulz

1 vs 1 Popping Battles
$500
Judges:
Dancing Queen - Rock Solid
Holotype - Animated Mindz
Shadowz

All Styles Battles
$200
Judges:
Leon the Pro- Diverse Soulz
Pawflo Sqwintz- Sole Power/Vicious Germz/TBB
Robert Anthony- Dallas Power House of Dance

On The Wheels of Steel
D.J.P Missouri/RockSteady Crew http://www.djpmix.com/

DJ D.L Oklahoma City/Get Down Alliance http://www.mixcrate.com/deejaydl

DJ SOI Dallas/RSF-Faded Dj's http://www.facebook.com/DJSOi

DJ Mutemor Dallas/RSF-Faded Dj's http://www.facebook.com/mutemor?ref=ts

Sponsors:
LoyalKNG http://loyalkng.com/
Fresh Kaufee http://www.freshkaufee.net/
NUE Clothing
Group Fly http://grpfly.com/

The event will be a fundraiser for www.bellabenefit.blogspot.com

https://www.facebook.com/events/301204696626043/

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, May 6, 2012

Sign Our petition

We have set up a petition to help with our MANDATORY prenatal testing. Please sign our petition

http://www.change.org/petitions/spinal-muscular-atrophy

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!

Wednesday, May 2, 2012

OUR GOAL!!

There are so many babies born with SMA on a daily basis, we just don't see it because most of us are not aware of it. By reading our blog, you will be a little more educated on this disease.

We are going to be hosting some fundraisers, including our 5K/ 1 mile Fun Run to raise money and awareness for Spinal Muscular Atrophy, (SMA). Since we are in the beginning stages of starting to raise money, we would love to strive for 1 million dollars but we understand it will take us a while to build up followers and supporters. We are going to set a goal to raise $250,000, once we reach that goal, we will continue to add to that amount by $10,000 until we reach $1,000,000,000! With your help, we have NO doubt this can be accomplished!

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!

Latest NEWS from Families of SMA

Families of SMA Awards New Funding to Advance a CNS Delivered Gene Therapy for Spinal Muscular Atrophy

May 2, 2012.

Families of SMA is pleased to announce the award of up to $750,000 for an important new grant to Dr. Brian Kaspar at Nationwide Children’s Hospital. This award will support preclinical development of a CNS-delivered Gene Therapy for Spinal Muscular Atrophy. With funding from FSMA, Dr. Kaspar’s team will initiate the studies needed for an Investigational New Drug (IND) application for this therapy to the Food and Drug Administration (FDA).
“Families of SMA is excited to be awarding new goal-directed drug discovery funding for this gene therapy program. This work follows up on a 2010 grant from FSMA to test the age-dependence in primates of this gene therapy. The new funding will allow us to accomplish several key goals simultaneously”, says Jill Jarecki, PhD, FSMA Research Director. “First, it will allow us to advance this very promising new therapy for SMA towards human clinical trials. Second, it will allow FSMA to fund multiple SMA drug programs concurrently, which have different approaches. Doing this will increase our community’s chances of successfully finding a treatment for SMA.”
“This is extremely important funding from FSMA to allow us to collect additional pre-clinical data for a CNS delivered AAV gene delivery into the cerebrospinal fluid, which will be important information to present to the FDA. It also jump starts research prior to obtaining government and commercial involvement which we are actively pursuing. We are quite hopeful for a positive funding decision on a recent NIH proposal for co-funding of this project with FSMA.” Brian Kaspar, PhD, Associate Professor, Principal Investigator The Research Institute at Nationwide Children’s Hospital, The Ohio State University.

The overall project goals are:
1) to optimize the dosing regimen for CNS-delivered SMA gene therapy;
2) to conduct the GLP toxicology, immune response, and bio-distribution experiments required by the FDA;
3) to prepare and hold a pre-IND meeting with the FDA;
4) to submit an IND to the FDA to begin human clinical trials; and
5) to produce clinical grade material for human studies.
The overall timeline for this work is expected to be three years.
This Program was chosen for funding by the FSMA Translational Advisory Committee (TAC), after reviewing multiple potential new drug programs. Every drug program carries risk of encountering hurdles at each of the stages described above. Therefore, a project specific Steering Committee has been put in place, which is comprised of experts in both gene therapy and in SMA biology, with representatives from academia and industry. This committee will help manage the project, ensuring it progresses in an efficient and well-run manner. In addition, project funding will be awarded upon meeting predetermined milestones, decided on by the Steering Committee.

“I am incredibly excited by FSMA’s decision to support Dr. Kaspar and his team in this very important project. As a pharmaceutical scientist who works every day in drug discovery and development, I am encouraged by the quality of the science and the fact that it aims to address SMA treatment from a different vantage point from other programs in the SMA drug pipeline. This is only the first step, but it’s a critically important step toward assessing whether gene therapy is a viable approach in SMA. Time will tell but I, for one, am incredibly hopeful and look forward to working with FSMA to facilitate the efforts of Dr. Kaspar and his team. I should add that as a parent of an SMA child, I am always looking for a medical breakthrough that could the transform the lives of SMA patients.” Timothy P. Reilly, PhD, DABT Director, Drug Safety Evaluation, Bristol-Myers Squibb. TAC Member.

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!

Monday, April 30, 2012

Please help our Mission get noticed!

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!

Saturday, April 28, 2012

Our Mission!

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!

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?

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?

SMA is an autosomal recessive genetic disease. 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?

Spinal Muscular Atrophy (SMA) is a motor neuron disease. 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

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!

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!