Bella and her daily battle…

Born in March of 2007 and given only an expected life-span of 6 months due to a rare disease called Porencephaly, Bella, has reinvented the definition of “miracle”. This blog is a tribute to her strength, love, and ever changing battle of both survival, and testimony to others in this world.

Laurie & I encourage questions, information, and any other type of participation with Bella’s Blog. Our goal is to raise awareness for Porencephaly and special needs kiddos in general. Please pass Bella’s Blog around as much as you would like… we appreciate your support and prayers!

If you would like to leave a note for Bella, please do so below… we promise to read her every single one!

Jeff & Laurie (Bella’s Parents)

Bella’s Daily Battle

Bella was born and diagnosed with a disease called Porencephaly. According to the National Institute of Neurological Disorders and Stroke, Porencephaly is defined as: An extremely rare disorder of the central nervous system in which a cyst or cavity filled with cerebrospinal fluid develops in the brain. It is indeed so rare, that most Neurologists can go their entire professional careers and never see a case of Porencephaly.

It is believed that Bella’s cyst in her brain was due to a clot in vivo, thus not allowing half the brain tissue to develop. Bella does not have any purposeful movements, nor is she able to speak or communicate. Due to the Porencephaly, she also has microcephaly and hydrocephaly. A shunt was placed in her brain to help remove the constant fluid, and has had multiple revisions throughout her young life.

In addition to her neurological disorders, Bella has multiple heart problems. However, the good news is that throughout her life, some of these issues have counter-balanced themselves minimizing doctor/surgeon intervention.

In September of 2009 Laurie, her family, and I made the decision to give her a tracheostomy. Leading up to this event, Bella had multiple hospital stays and they were becoming ever so frequent. With multiple doctors trying to find physical blockage to the airway with hopes of surgically removing them… they came up empty. According to Bella’s Neurologist, one of the first signs of brain deterioration is respiratory failure… it was then decided to give Bella a better quality of life by giving her the tracheostomy. A year after her surgery, it has turned out to be one of the best decisions ever made for her. However, as with most of Bella’s life, there are always risks involved to her care… having a trache is no different. She is now open to multiple risks of chronic pneumonia and bronchitis, a long with being a higher risk for strong respiratory infection. Because of this, and her inability to move, etc. she requires 24-hour care.

Bella’s schedule often includes: Physical Therapy, Speech Therapy, Occupational Therapy, and Vision therapy. (Several times a week at home and at school) Because she is unable to eat, she is provided nourishment via a G-Tube in her stomach 3 times daily (including all of her medications). She receives at least 2 breathing treatments and 2 trache cleaning sessions per day as well. We like to joke that she’s a high maintenance girl… but we don’t mind! Let’s just say she holds the record for the time it takes for a girl to get ready for school!

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23 Comments (+add yours?)

  1. Evonn Satterfield
    Sep 23, 2010 @ 17:02:57

    This is Awesome! Kudos mom and dad. Y’all are such a blessing to one of God’s special angels. I am so blessed that each of you are a part of my life, too.

    Reply

  2. Ashley Marshall
    Sep 23, 2010 @ 17:38:18

    God Bless you Jeff, Laurie and Bella. You all are always in my thoughts and prayers.

    Reply

  3. Amy Preston
    Sep 23, 2010 @ 18:24:10

    You guys are in my prayers daily. God knew what he was doing when he decided you two would be this angel’s parents. You both are amazing and are truly blessed by Bella who is in return blessed to have both of you. Glad to be able to keep up on this blog!

    Reply

  4. Courtney English
    Sep 23, 2010 @ 20:35:07

    You guys are amazing parents and she is a beautiful and lucky little girl!!!

    Reply

  5. Jeff
    Sep 24, 2010 @ 14:45:12

    Bella says thank you for the kind words and she loves you all very much and is happy to know that people are reading! Thank you again for the prayers… and encouragement!

    Love,
    Bella

    Reply

  6. Dr Justin Marley
    Sep 25, 2010 @ 10:17:06

    You are an inspiration! I wish you all the best

    Reply

  7. Shyla Flickinger
    Sep 25, 2010 @ 21:56:36

    I love this family!!! Bella you are my hero in life. I love watching you grow up…even in the burnt orange…blech! :o)

    Reply

  8. Taylor Ivie
    Sep 26, 2010 @ 00:14:56

    Hey guys! This is wonderful! I’ve been watching Bella grow up in pictures and I’m so proud of you all. This will be a wonderful resource for so many people, not only to follow along with Bella’s progress, but for people who need to know more about the things she and you have gone through so bravely! Thanks Bella for sharing your life with us!

    Reply

  9. Jodi Wright
    Sep 29, 2010 @ 18:22:02

    Bella,
    You are a beautiful young lady and you are loved by so many. I know you are strong and you need to show those doctors that you can fight through anything cause we all know you can! I proved to my doctors that I was stronger than they thought! You have two wonderful parents by your side! Your dad, Jeff, he’s one of the funniest guys I know. I will be praying for you. (:

    Reply

  10. Sherry Owen
    Sep 29, 2010 @ 19:45:24

    Laurie, Jeff and Bella,
    You are all in my prayers daily. Thanks for the website, as it will be an inspiration to all who visit! Love you all! Sherry Owen

    Reply

  11. Erica Medrano
    Oct 12, 2010 @ 00:29:38

    This blog is a wonderful way to educate others of this rare disease. My family and I will pray for Bella and her family’s journey! Through God all things are possible! You all are a true inspiration of unconditional love, like our God has for us!

    Reply

  12. Melissa Hall
    Nov 19, 2010 @ 16:27:35

    You are all in my prayers everyday! She is such a beautiful little girl and very lucky to have y’all as parents. I think it is so great that you all are keeping this blog to help others that might be going through the same things. Bella is such an amazing little angel and wish you all the very best. Please keep me informed to how she is doing.

    Reply

  13. Tracy Locke
    Jan 07, 2011 @ 22:43:48

    What a blessing she is… I will always be praying for her and all of you. She really is an inspiration and so are her parents. The poem on Laurie’s facebook page is beautiful and makes me cry.

    Reply

  14. Stephanie Gonzales
    Jan 10, 2011 @ 16:43:57

    Jeff, Bella and Laurie,
    Your daughter is a true inspiration. My daughter passed away from holoprosencephaly and lived for 2 hours. She would have been 5 on Jan 13. You guys will be in my prayers everday. I wish you guys and especially your prescious Bella blessings in all you do…. Her beauty takes time to get ready for school….

    Reply

  15. Kristin Merritt
    Jan 10, 2011 @ 17:02:23

    Laurie & Jeff,
    We raise our kids with every expectation that they will flourish into successful happy adults. The truth is that the task at hand is much harder then we ever expected, harder then any one mother can do alone. So when we are blessed enough to meet people like you, who give everything they have to not only raise a beautifully challenging little girl but to be good wholesome role models to a child like David…it’s delightfully refreshing and inspiring. i love how every single time Bella’s advances no matter how big or small the event is…you treat it like a victory! That’s is how we all should raise our children and praise our children. I love you both individually for many reasons that make you who you are. I love you more as my best friends who share a love, a marriage, a family and a home filled with happiness and joy and faith.

    Bella,
    Oh Bella Bear…where to start with you my sweet girl. YOU ARE MY SUNSHINE! I can honestly say I’ve never learned so much from someone who has never said a word to me. Your life is an inspiration to me because you’ve taught me one of the most valuable lessons in life…. to never take anyone or anything for granted. Never let an opportunity or moment pass by, because the truth is we never know how long we will be here. How long we get to see the world and share our love with others. You’ve brought so much meaning to David as well. He loves to see you and check up on how you are doing…he especially loves that nurse of yours Mariah! 🙂
    Until next time doll face… Love Aunt Kristin

    Reply

  16. Nancy Neal
    Mar 05, 2011 @ 19:27:08

    Dear Bella,
    I have just become aware of all the struggles you’ve had. Wow! You are such a strong little girl. You have the most beautiful blue eyes with long eyelashes! My little girl thought you looked so cute when your mom put your hair in dog ears! I know you must feel very blessed to have parents who love and care for you so tenderly. I knew your mom really well when she was a little girl. I taught her in 2nd grade, and she was my oldest daughter’s friend. I have some really funny, sweet things I remember about her. I would love to meet you one day and tell you all those little girl stories! I will pray for you to have happy, healthly days.
    Hugs,
    Nancy Neal

    Reply

  17. Shane Tolleson
    Mar 08, 2011 @ 13:04:51

    Hey Bella, you do not know me but I am a high school friend of your mommy’s. Boy have I waited for a chance to send you a message!! I have followed your mommy and daddy’s post of how much love and joy that you bring to their life!! I know you don’t know me Bella,but sweetie you have brought a gigantic smile on my face and a new meaning to my life! You are a beautiful and special little girl! I want to wish you an amazing Birthday!! Whoop whoop 4 years old yea!!!

    Bella…… God loves you soooo much and He is always there with you. You are a strong, tough, determined, battle tested soldier of Christ! I look up to you and You are my Hero!!

    Shane

    Reply

  18. Grace
    Mar 08, 2011 @ 14:08:48

    Happy Birthday Bella! You are proof miracles happen.

    Reply

  19. Shannon Gallentine
    Mar 08, 2011 @ 14:53:46

    Praying for you all!
    May God continue to Richly Bless and Keep You!

    Reply

  20. Jennifer Daehling
    Mar 08, 2011 @ 20:55:27

    Happy Birthday Bella! What a gift from God you are. I don’t think I know anyone with as much strength and courage as it seems you have from your blog. You bring God glory every day of your life!

    Reply

  21. Pat Goodnight
    Mar 26, 2011 @ 21:54:27

    Dear Bella,
    I am at a loss for words to describe what a blessing to me God gave just by meeting your family and learning about you. I believe angels are all around us doing God’s will and they come in all sizes, and descriptions and surely, you are one of them. God sent you with a very special mission and He sent to you to a family that He knew would care and love you best.

    Reply

  22. Pat Goodnight
    Mar 26, 2011 @ 21:57:03

    Dear Bella,
    I am at a loss for words to describe what a blessing to me God gave just by meeting your family and learning about you. I believe angels are all around us doing God’s will and they come in all sizes, and descriptions and surely, you are one of them. God sent you with a very special mission and He sent you to a special family that He knew would care for you and love you best.

    Reply

  23. Carrie Boling
    May 24, 2011 @ 21:38:55

    It was one of the greatest pleasures of my life to meet Bella, and her WONDFUL family. Never have I seen such devoted parents, and grandparents. Even though they’ve left me here in Austin, and have moved on to a great life in San Antonio, I often think about them and miss them! Laurie, you are truly an amazing woman, mother, wife, and daughter. I was so amazed with the love and compassion you have in your heart. The stories you, and your parents, both told of Jeff, and his love for Bella always brought a tear to my eye. I honestly don’t know of a single person that deserves true happiness then yourself! You were truly hand picked by God, to have Bella as your angel. You do God proud, and raise her, love her, and cherish her BEYOND any expectations God could have ever had for you. I write this now, with tears in my eyes, thinking of how blessed I was to have gotten to know you and your family, in the little time that I did. Even if I did steal the sugars from Bella while you were out honeymooning without us! lol Keep up the amazing work you do. 🙂

    Reply

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