There was a time that I was so worried about Brandon's future, that there would be a time when I was not on earth any longer and worried who would take care of him, the effects  it would have on his little sister, and now knowing he is terminally ill, makes me realize I wish I still had that worry.

 

Here I write before you today to let you know that if you have been graced with Brandon loving you then you have been very fortunate, he loves so unconditionally without reservation, he knows nothing else.  He is so real and it's wonderful.  If you have met Brandon as the little boy he is today, I am positive he has hit a spot in your heart and has left a lasting impression. You would not believe how many people he has made a positive impact on, just from this website even. Let me remind you, he can't have a conversation like us, and yet he can light up a room by the innocence he has.  He has done his work God has sent him to do and continues to do it every day he breathes.

 

As many as you know...

 

Brandon's latest MRI showed growth.

 

Brandon has a slow growing tumor ~ center of his brain where his corpus callosum should be. Brandon will hopefully live too early adulthood, he will slowly loose skills and get worse each time growth occurs. Such as a typical person who gets a brain tumor and slowly has all the effects, Brandon's will just be a more longer harder process, because of the growth time. To do any surgeries because of the size and location would take him to where he would be in the final stages, there is nothing left to do other then enjoy him every day and stimulate him as much as possible. We have got so many opinions we have asked about radiation, his tumor is not the type to respond, we have asked about gamma knife and had other hospitals look over his images, and because of the size and location he is not a candidate. We try to have a lot of hope, but we have also decided to let him enjoy as much as he can of his life. Shortened it will be, but longer than most people get when their child is diagnosed with a brain tumor, and also the ability to hope for some newer technology to come along, especially before he starts to suffer worse from the pressure and sad outcome that all others have to endure with a tumor.

 

The best thing we can do is just love him and stimulate him and challenge him as much as possible so when he starts to lose his skills they may go slower than typical.

We have talked to doctors at Duke Children's Hospital, The Preston Robert Tisch Brain Tumor Center, UNC Children's Hospital, Memorial Sloan-Kettering Cancer Center in New York, Johns Hopkins, Professors, Md's as far away as England, if you can think of it we have contacted them with Brandon's MRI's on disk. Are we giving up hope, no,  of course not, do we want you to tell us of everything you hear that may help, of course we do, are we willing to try "out of the box" techniques, yes, have and will continue, do we want you to get addresses and contact info to send his disc to more to view, yes, will we have his skull drilled and sawed open to only make him worse sooner, no we won't, to make him better, yes we will.

 

We have concluded Brandon is our miracle child, the child we wanted and tried to have for a long time,  the child God wanted us to have and care for,  the one God gave us and created, the one who loves us, can light up our life and yet has the hardest time processing so much and needs help doing the simplest of things.  He was given to us for a reason, and God knew he would be in good hands.

 

We ask each of his friends to just be his friend and to enrich him by stimulating him and understanding him, it's difficult for Brandon to control how he feels and the things around him, he has learned to do different things too slow his world around him and let someone know he can't process as fast as you or I. He has taught Rob and I how to not take anything for granted, to appreciate the little things, and that what is suppose to be in your life, will be, and what's not is not worth the effort taken away from what is, our door is always open too love, our hearts over flow with it for him.  We have been so blessed to have BOTH our children.

 

For those who are meeting Brandon today for the first time he has Lipoma (a slow growing brain tumor), Absence of the spectrum pellucidum, Sensory Integration, he also has Agenesis of the corpus callosum (no brain message center). Brandon also has a small pituitary gland and been diagnosed with Autism, but that is the least of his disabilities. He has all the Development Delays in gross and fine motor, communication and language delays, socialization delays, feeding difficulties - all associated with his diagnoses. The doctors say he won't live as long as you or I, God will take him when its time.

 

Imagine your child never growing up and moving out. Imagine his needs growing and growing.  Imagine him never being able to work, marry, go to college. Imagine your having to do everything for him. That the left and right sides of his brain cannot communicate. Just like us, you would care for your child, because you love him, you would take on every battle, do everything you can and hope for it to be longer then shorter. At least we hope all parents put their child before themselves.

 

We feel Brandon is at the right school, we feel we are in the right place, and there is nothing left to do then just make him and his little sister happy, the time we have with him is a miracle, he is one special little boy. We have went thru SO MUCH for him and his little sister and there care and bills, and yet there is nothing we would do any different. We do ask for help so Brandon don't have to go without things he should be able to have and do, just because of medical bills. He has a lifetime to live pretty much in the time it takes most to just graduate school and start life. There is still many smiles and good times he needs to have.

 

Many of you also know we have out of town medical appointments where we stay in hotels for several days sometimes up to 4 days a month, we will still never stop searching for that miracle or a way to help him.

 

Don't take anything you have for granted, it may be gone tomorrow. Love what loves you with everything you got.  Know your blessed no matter how bad you think you have it.

 

Say a pray tonight for Brandon, he is a very deserving little boy.

 

I hope that Brandon has helped you in some way, with us sharing his story.

 

Kelly

Brandon's  & Amber's mommy

 

To meet Amber,

Brandon's little sister,

who herself has had two surgeries

click here

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