As most people know, I am Brandon's step-mom. I met Brandon when he was 5. His dad and I started doing some serious dating in January 2001. Brandon would come to my apartment and have a horrible time going up the stairs. By May, we were married, and by the end of June I had moved in with Brandon and his dad. Brandon was hyper and WILD! He run around and fell almost NON-STOP from the time he got up till the time he literally fell over to sleep. He had severe ADHD and some pretty MAJOR behavior problems to go along with it. He was on medicine (Adderall) for this and had to be reevaluated FREQUENTLY so his meds could be adjusted. The docs were very skeptical about giving him high doses of medicine, and the low doses just made him cranky and irritable. Brandon had got kicked out of daycare, almost suspended from kindergarten, and had been hitting and kicking fellow students, his teachers, and etc. School started early August, and within 2 weeks the teachers were begging us to do something with him. Well, I took him to the doc, and explained to her how everyone is just exhausted from trying to get him to just settle down. I told her about him running around and falling 20 times a day, and I told her about him not being able to go up stairs well. I told her that I though he might need to see an orthopedist on top of everything else because his calves were HUGE! She looked, and then asked Brandon to sit in the floor and then get up. He did, using the classic Gower's move. She sat him on the table and checked his reflexes-he didnt have any to his legs OR to his elbows. How strange. She looked at me and said," I am so sorry to tell you this but I really think your son has Muscular Dystrophy." It hit me like a ton of bricks. I went home in almost a panic and looked it up on the computer-hoping for a mistake, after all, she was a brand new doctor! She shouldnt be able to tell that type of thing that easily! As soon as I seen it, I knew that she was right. My husband come home and I told him her thoughts. I showed him the information I had looked up, and we both pretty much knew-but stayed in denial. Then there was Brandon's mom. My husband had to tell her of the potential diagnosis. I dont think there was a dry eye in our family for months! We didnt take it real well at all. I still remember going for days and days without sleep because I just couldnt handle the thoughts of Brandon going through that. I couldnt handle the thoughts of having to watch him go through it.
He didnt have a DNA test immediately only a CK which was over 200,000! Brandon's neuro doc-Finichell ( our pediatricians former teacher/mentor) didnt need DNA. He told us immediatly what he had. After Bill and I read up on it, we knew in our hearts that he did too. We went ahead and got the DNA test, just to rule out anything else. Of course it showed several deletions which confirmed our worst fears. Once we had a confirmation, (about a month later) I slowly started to come around and deal with it a little better. I just had to make myself adopt the mentality "ok, this is the cards we are dealt--how can we make the best of it? " I think both of us adopted that attitude. It completely changed our life when we did. We became the people that no one ever thought either of us could be.

After his diagnosis, Brandon was granted a wish from the Make a Wish Foundation. I was a little uncomfortable at first because I thought he was way too young for it, but the folks there insisted he was at the best time of his life for it. Brandon got to hit Orlando wide open! He got to slime his dad at Nickelodeon. It was such an amazing experience for him, and for us. We stayed at Give Kids the World. It was so inspiring, yet it was almost impossible to walk around and not cry when you seen others who were there for reasons even worse. We were so inspired by what they were able to do for him, and us that we didnt want it to end. We kinda just wanted it to be the beginning of the rest of Brandon's life.

After we returned from Brandon's wish trip, we tried our best to take him to all the places we could, and let him experience everything we could think of. Brandon is now 13, soon to be 14. He has done so many things in his life already. He has fed the dolphins, he has been in the ocean in his wheelchair, he has been to numerous fairs, museums, shows, and events. He has been in a race car on the Talledega Speedway doing 165 MPH! He had become a king for his birthday. One of these days, I will get all the adventures we have had lined up to were everyone can see them. We have tried to give him a lifetime of experiences in his 13 years. I dont think we will ever feel like we can or have done enough for him. We continue to try and take him on adventures but it has gotten really hard on him, and us. I dont know how much longer we will be able to do stuff, but we are going to continue to try.

It is our goal in life to keep running and doing for as long as Brandon can tolerate it. He has inspired us and made us be much better people than what we were before. Dont get me wrong its not like we were horrible before. We were just the average normal family-well somewhat normal. Every since we made that commitment to each other, to him and to my daughter to give him AND HER the best life possible, it has improved our lives. It give us focus on the things that are truly important in life. It pushed us and molded us to be better people for them, and for each other. We have a wonderful family, and our kids both have amazingly witty senses of humor. They are constantly joking about something or pulling pranks on one-another or US. They are amazing kids*although being teenagers they can both be a pain in the rear!*

We are always looking for our next adventure. It has actually been a while since we have been able to do anything major due to our recent relocation to Texas, and purchase of a power-chair friendly home. We have done a few little things, but nothing big so far. We will be having our next BIG adventure PROBABLY next summer, although I am trying to plot something small out for his birthday. Any suggestions in the Texas/El Paso/New Mexico area always welcome!

So I guess that sums up a little bit about when Brandon come into my life...

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Comment by Jo-Anne on January 8, 2009 at 6:03am
Hi MommaToo. Wow, I have just read your story and it is amazing. You have gone all out to express how things have happened for you. Thought about doing it but have not got there yet. My son is now 11 turning 12 next month and we only found out about him 2 years ago. I have been told about Make a wish where the kids can choose where they would like to go, with regards to this, it has been on my mind of when is the best time to do this. He is still walking and there are many things he would like to do, I suppose getting in and doing the things for him is the way to go, financially it is not always possible but that should not keep us from giving our kids the best life they can live. I am grateful I came across your site and this has inspired me too. Keep up the good work. We can all learn from each other. Thank you.
Comment by MommaToo on December 30, 2008 at 7:09pm
Brandon is 13 almost 14 and has been doing amazing-behavioral wise. He is on the Daytrana patch and it has been an absolute life saver for us! I cant go on about how big of a difference in has made for all of us!

When he was in kindergarten, the teachers really didnt try to single him out as the naughty boy, Brandon did it to himself. Anytime the teacher mentioned anything, his classmates would automatically look at Brandon. I remember his little ole classmates TRIED to help him out by saying things like "here Brandon, work with me" or "Brandon come sit here with us". Brandon done a whole lot of stuff that they (classmates, teachers and daycare workers) tried to ignore, but finally just couldnt. Brandon is an amazing kid, although he does remain impatient and short at times. He is a bit of a perfectionist in some ways. He is so shy that he gets very nervous when we/he are going to be meeting new people or etc. He is very "high strung" as they say. He likes things his way, and isn't open to too much changing of things. Overall he has a great personality which is so easy to see, once he warms up to you. He is very kind hearted.

Brandon was treated great at school for the most part, although I dont know how many of his teachers ask me "How do you do anything with him at home!" Now its been some years, but I cant remember Brandon having any issues with teachers treating him like a naughty boy--unless he was doing some EXTREME things-which he did A LOT of for a very long time. (Now his mom may remember some other stuff that I dont--it was so wild for so long I didnt even know my name at some point!)
Once we found the right meds for Brandon, it made all the difference in the world. He went from a student that had notes sent home saying "Brandon is not capable of staying even on the simplest task, and wants to pick fights with anyone and everyone in the class" to notes that praised his kindness and eagerness to do his work. It was such blessing for us! I, (as his step-mom) had about 4 years of not knowing who would go crazy first, me or his teachers. Once he got the right meds-I had the boy that I knew he could be!
Brandon was/is brilliant in MANY MANY ways. He has always been a budding chef and has loved to cook for as long as I have known him. He is amazing with electronics, and has always been one to figure out computers and games and etc so easily! He used to LOVE riding his bike, and rode it some times from the time he got up till he ate dinner and crashed into his bed.
Hope this helps.
Comment by *annette* on December 30, 2008 at 4:40pm
can I ask how Brandons behaviour is now? We are going through an ASD assessment with Joe also ADHD. He is 6. Physically he's brilliant but emotionally he struggles as do people around him and he's constantly treated as a naughty boy at school which riles me!

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