First Annual Kaden's Wish Fundraiser

Kaden's Wish

Kaden Stark is a 7-year-old Make-A-Wish recipient who decided that he, along with his family, wanted to start a fundraiser that could help pay for other kids to receive wishes. Kaden’s Wish has been created to raise money and awareness for the Make-A-Wish foundation and the United Mitochondrial Disease Foundation. On November 10^th, 2012 we will hold the first annual Kaden’s Wish Fundraiser at Champps Americana inBrookfield, WI. There will be a silent auction and a watch party for the Wisconsin vs Indiana football game. Come join us for some Badger fun and support the Make-A-Wish Foundation. Check out our Kaden's Wish facebook page.

Below is Kaden's Make-A-Wish story that tells a little bit about our amazing experience. 

Kaden's Story

Kaden has a rare form of mitochondrial disease called Leigh syndrome. Leigh syndrome is a fatal progressive neurodegenerative disorder and there is currently no cure. This genetic disorder causes his brain to not get enough energy at times. That lack of energy production does damage to Kaden’s brain, which at this time causes Kaden to have motor issues.

The biggest issue caused by Kaden's mitochondrial disease is Dystonia. Dystonia is an involuntary contracting of the muscles. A doctor once described it to us as being akin to getting a cramp in a muscle. Only Kaden could have a dozen muscles cramping at once and those cramps could last for days or even weeks. This sounds painful but you wouldn't know it from Kaden. It's rare that he isn't showing off that beautiful smile or laughing at his siblings. That's Kaden and everybody knows his smile.

We had heard of Make-A-Wish a couple years ago from several families at New Berlin Therapies, where Kaden goes for physical, occupational and speech therapies. The stories we heard were all incredible and it started us thinking that we really need to get away with the kids. We started the paperwork with Make-A-Wish and before we knew it, there were wish granters at our house and bags of toys for all four of our kids. The process was very easy and everyone associated with Make-A-Wish was phenomenal. They took care of everything, and I mean everything.

Kaden's wish was to go to Disney World. I think he chose this destination as much for his brother and sister as he did for himself. Kaden became a hero to his brother and sister. Anyone who knows Kaden knows that he doesn't mind being the center of attention. On our trip to Disney World, Kaden was treated like a rock star and he was in heaven. The trip was unbelievable. With this Make-A-Wish trip we went to a resort called Give Kids The World, which is exclusively for Make-A-Wish kids. Everything there is fully accessible and they handle any and all needs that a family with a disabled child could have.

We were given 3-day passes to Disney World, 2-day passes to Universal, and a day pass to Sea World. We started our trip with petting dolphins at Sea World. Then we celebrated Kaden's little brother's birthday the next day at Magic Kingdom. Went on a safari ride at the Animal Kingdom. Saw shows and rode rides at Hollywood Studios. Toured the world at Epcot and met our favorite superheros at Universal. The kids had the time of their lives and talk about that trip all the time. It was truly magical.

The biggest thing that my wife and I took from this trip was the fact that we don't need to hold back. I know other families with disabled children know what I'm talking about. Before you go anywhere, you have to think; is there room for the chair, can I get into a building with the chair, will we have to stay out in the heat or cold for any length of time, can we leave early if Kaden isn't feeling well. These are things that most people don't generally have to think about. When we go somewhere we always have to have a plan.

The accessibility of Disney, Universal and Sea World was incredible and the fact that we can go back and feel comfortable that there are facilities and activities that not only include Kaden but that he loved, will ensure that we go back, and often. This trip made us realize that we need to do more, take more time, find more activities that we can do as a family. Time is too short to worry about every little detail.

Our experience, as a family, with Make-A-Wish has been nothing short of amazing. It has inspired us, and especially Kaden, to do everything in our power to raise funds for others with life-threatening diseases to have the same kind of experience.

Catching Up: Part 2

Just after the kids got back into school, we took a week off and went on vacation. We went down to St. Simons Island in Georgia. We drove down and remarkably, the kids did really well. It was a great trip. The kids got to play in the ocean for the first time. Even Kaden was chillin' in the sand and went swimming with dad. Jacob thought it was the coolest thing ever.

Our trip back home wasn't quite as fun but coming home from vacation is never as much fun as going. The worst part of our return trip was that the kids were not getting enough sleep, especially Kaden. The night we got back Kaden had another seizure. Unfortunately, any stress on the body can trigger more seizures. A few days later we all got really bad colds. In fact, mine is going on day 9. No fun. This too triggered more seizures for Kaden. He had three more over two nights. These happened to be the worst two nights of him being ill. No coincidence.

So we have talked to Kaden's neurologist and have decided to increase his ant-seizure medication. The doctor told us that the fact that fatigue and illness is so easily tipping him over the seizure threshold means his medication needs to be increased. So since out increase last week... so far no seizures. We keep our fingers crossed because if this drug fails to control his seizures it will likely mean a hospital stay to try new drugs. Yuck!

Last weekend we went to the first annual Energy For Life Walk which benefits the United Mitochondrial Disease Foundation. Our friends and family showed incredible support as we raised over $3500 and there were 44 walkers representing the Kaden's Kure team (the largest team at the walk). Kaden was so excited and we also learned some incredible news at the walk.

We finished the walk next to Kaden's genetic counselor from Children's Hospital. She says, "I was just about to call you guys. There is a new clinical trial for a drug that may benefit Kaden." Now my ears are perking up! She tells a little about the most recent trial and results that were conducted in Italy and frankly it sounded too good to be true. So this past week she sent me an email for a WebEx teleconference with the doctors running the next clinical trial. I listened for an hour and a half on Friday.

The doctors discussed the results of the first trial in Italy and it sounds amazing. There were ten kids in the trial. All ten not only showed a stop of the progression of the disease but ALL TEN showed a reversal of the diseases affects. Crazy awesome! The doctors also discussed the inclusion criteria for the trial (all the things you need to be considered a candidate) as well as the exclusion criteria (all the things that would keep you from being considered). Kaden meets every one of the inclusion criteria and none of the exclusion criteria. As I see it, he is a PERFECT candidate for the trial.

The drug is called EPI-743 from Edison Pharmaceuticals. This trial is being conducted in three locations Stanford University, Baylor University and Children's Hospital of Akron. All much easier to get to than Rome, Italy. However, for a chance to stop the progression of Kaden's disease or even reverse the affects, we would go anywhere in the world.

So now we play the waiting game to see if Kaden gets in to the trial. I am planning daily phone calls to whoever we need to bother about the trial. Definitely poised to be a pain in the ass until we get him in. Thankfully the doctor that diagnosed Kaden at Cleveland Clinic and discovered his genetic mutation causing his disorder, is the doctor in charge of the Akron trial site. Yeah. Planning a call to him tomorrow.

If anyone is interested in learning more about EPI-743 or the trial here is the link. We will be updating regularly as we find out more. I will be posting again this week about another event coming up that we are really excited about. Til then, thanks for all the prayers and well wishes!

Catching Up: Part 1

Okay, so it's been a while. Sorry about that. We've just been having too much fun to stop and reflect lately. We had a great summer even though there was a stretch that left us stuck inside because of insufferable heat. One of the big risks for a child with a mitochondrial disease is overheating. That meant we had to stick to air conditioning a lot this summer. That's okay, better safe than sorry.

Well our spring was fairly uneventful. Kaden finished up 1st grade and did a great job. The school has really done a good job figuring out ways to assess Kaden and he likes showing off how smart he is. Math is definitely his strongest subject but he loves pretty much everything about school.

When we did get out this summer, we were at Kylie's softball games, visited cousins, played on a trampoline, and Kaden did a lot of walking in his gait trainer. On days when it was cool enough, he also spent a lot of time outside with his papa under their shade tree.

Late this summer we did have a little scare. Kaden had a seizure. He went 11 months without a seizure. Of course, Kaden has been taking anti-seizure medication but when he gets stressed by illness or fatigue he is more prone to having seizures. Still, 11 months is great. With a slight increase we didn't see anymore seizures for the summer.

Toward the end of the summer we were able to go to a Make-A-Wish event called Yacht Blast for Kids. At this event our whole family got to go to the Milwaukee Yacht Club and go out on a 45 foot yacht. That was really cool. The best part of the event, however, was the dinner and the after party. Our family was asked to stay and say a few words about Kaden and his wish from last year. The event included dinner as well as a silent and live auction. At the end of the night Kaden drew the name for the winner of a brand new Harley Davidson motorcycle. Needless to say he was really excited. Dozens of people came up to meet Kaden and thank us for sharing his story. Make-A-Wish is an incredible organization and that night has really inspired us to do more for this organization (more about that later).

Stay tuned for the rest or our catching up.

Happy Holidays

Well, the past two months have been very busy. We ended October with an amazing trip to Disney World through the Make-A-Wish Foundation. The trip was unbelievable! We all had a great time and the accessibility of the resort and parks was phenomenal. Kaden was able to ride on many of the rides in both Disney and Universal. I would strongly recommend both parks to any parents who have a disabled child. When we think about going somewhere, whether it be the zoo, a park, a mall, etc., we always try to think ahead for the challenges of having a child in a wheelchair. We have to consider how long we have to wait in lines and where we will eat. If we are traveling, we have to consider accessibility to the room, accessibility in the room, and sleeping arrangements. All of this was taken care of for us with this trip. The Make-A-Wish Foundation really does a great job and allows families to feel safe and comfortable.

While in the parks, we had a guest services badge that worked as a fast pass to almost everything in the parks. I initially thought that this was a perk of being associated with Make-A-Wish. What I came to find out is that these badges are available to anyone who has a disability. At both Disney and Universal, you can go to guest services and if you are able to prove that someone in your party has a disability then you can get the badge. Now that we know this, we will definitely be making another trip in the next couple of years.

After we got back from Florida, Kaden had an MRI and a follow up with the neurologist. While we were in the office Kaden had an "episode". The episode consists of Kaden sticking out his lower jaw, turning his head to the right and looking up toward the ceiling. We have been seeing this type of episode for several months and had thought it was dystonic. The neurologist was concerned that this was a seizure because it happens in episodes so we did an EEG right there in the office. The EEG showed some slowing which is normal after a seizure. Now we are freaking out again. To be certain, we admitted Kaden for an overnight observation. He was hooked up to the EEG all night and was not very happy about it. What we found was that the slowing that they were seeing was his baseline and not necessarily associated to a seizure. This was a relief. We were sent home and the neurologist decided to increase his seizure medication as a precaution and also to see if it affected the episodes.

We spent the next week and a half increasing the medication in steps. Kaden did not react well. The increase made him very lethargic. To the point that by 5:00pm each day he could barely hold his head up. The good news, I guess, is that the episodes did not stop. He was still having them a couple times a week. The reason this is good is that it is likely dystonia and not seizures. So we called the neurologist and started reducing the medication. We now have Kaden back to himself and not the slug that the medication had made him.

We also got some bad news from the neurologist. Kaden's MRI does show some deterioration of the brain. The image shows two things. First there are more lesions on the outer portion of the brain, which is likely the reason for the seizures. The second is a general shrinkage of the brain. The way you can see this in the image is that there looks to be just a little more space throughout the brain. What this tells us is that Kaden's disease is progressing. How fast it will progress, there is no way to know. Coming to terms with this is difficult. All we can do is continue to look for ways to slow the progression and hope that some day there is cure for his disease. With the continuing advances in medicine you never know. We choose to stay positive and enjoy every minute we have with Kaden. He's as tough as nails and somehow, some way, we continue to believe he will beat this disease.

Now that I have thoroughly bummed everyone out, it's time to remember that this is the season for hope. We want to wish everyone a happy holiday and thank all of our friends and family for their continuing support.

Merry Christmas!

Steve, Miki, Kylie, Kaden, Jacob & Maddie

Ready for a trip!

The last two weeks have gone well for Kaden. He is now on Keppra which is a fairly common anti-seizure medication. Knock on wood... no seizures since the day we took him into the hospital two weeks ago. He is still adjusting to the medication because it makes him a bit drowsy. Otherwise, things have gotten back to normal and we keep moving forward.

So, I promised some good news in the last post but we have been hesitant to talk too much about it because of the craziness of the last two weeks. Now that it seems Kaden is stable with the seizure medication I think it's okay to let everyone know.  Kaden has been granted a wish by the Make-A-Wish Foundation. He chose to go to Disney World and we are leaving next Friday the 21st. The kids are so excited! I have to say that Miki and I are very excited as well. I think that Kaden is more excited about being the reason we are going than actually going to Disney. He is Jacob and Kylie's hero.

It really is an amazing opportunity. We found out that Kettle Moraine High School is Kaden's sponsor for Make-AWish and a couple weeks ago our entire family was invited to one of their football games. They had a fundraiser prior to the game with carnival games and rides and the entire thing benefited Make-A-Wish. Basically it was a fundraiser for our trip to Florida. Unbelievable!

We'll be sure to take lots of pictures and post them after we get back. Thanks again to everyone for their prayers and well wishes for Kaden. We really do appreciate it. 

The Scariest Eight Minutes

It was a typical Monday morning in the Stark household. Miki, Maddie and Jacob were up at about 5:30am. I decided to stay in bed instead of going for my morning walk, due to the rain (lazy ass!). I got up about 6:30am and Miki was preparing the kids' breakfasts while I prodded Kylie to keep moving (Kylie's not a morning person) and get ready for school. Miki left about 7:00am for work and Kaden was still sleeping.

About 7:10 I went into my bedroom to check Kaden on the TV (we have a night vision camera in Kaden's room so we can see him while he sleeps). When I switched over to the camera I thought, "Okay he's moving, time to get him up." Then I noticed how he was moving... rhythmic jerks. I sprint across the house, nearly ripping the door off the hinges to his room. When I get to his bed my fear is affirmed. Kaden is having a seizure.

Now, Kaden had something called infantile spasms when he was about 8 months old. These are a form of seizure and was related to his mitochondrial disease. We were told then that there was a chance he may develop seizures later in life but there was no way to know when or if it would even happen. The fact is, once you've had any type of seizure, you are more susceptible to them later in life. Kaden made it nearly 6 years and Monday it happened.

A lot of thoughts ran through my brain as I'm watching my 6-year-old in the middle of a seizure. First, is he safe. He sleeps on his side which is the best position when seizing so you don't swallow your tongue. Second, how long could he have been seizing for? That's important because anything over 5 minutes and I need to call 911. Third, stay calm because the other 3 kids are in the next room and I didn't need them freaking out. Fourth, call Miki and get her back home. Now there were other, darker thoughts that I don't want to rehash but after I entered the room the seizure only lasted another minute and a half (felt like an eternity).

So now that the seizure is over I pick him up and take him to my bedroom. When we get there, he is unresponsive. If I thought the minute and half seizure was bad, now the clock starts ticking on the scariest eight minutes of my life. Kaden's eyes are open staring off into nothing. I talk to him, snap my fingers, call his name... nothing. No movement, no response. I know he's breathing I can see his chest moving up and down, but now I start to wonder how long did the seizure last. 3 minutes. 5 minutes. 10 minutes. Can't be more than 10 minutes because Miki checked him before she left. By this time I'm starting to really panic, Miki is on her way so I lay down next to him and start hugging him, stroking his hair and face and talking to him. Five minutes and no response. Now I'm thinking, "did I just lose my son." Then I scold myself, "NO, he's breathing we'll get him to the hospital and they can give him medication that can help with damage done from a neurological event like a seizure." I keep talking to him and still no response and no movement. His eyes aren't even blinking. This is unbearable.

Then it happens... he answers. I have kept asking him to talk to me, asking if he's okay, telling him how much I love him. And he finally answers, "yeah", he blinks his eyes and starts to move a little. WOW, relief! I found out later that this behavior is actually normal after a seizure. Most people are completely spent after a seizure and sometimes it takes a while (as long as an hour) before the seizure victim is back to normal. That would have been helpful info. during those excruciating eight minutes.

Well, we ended up calling Kaden's doctor and he recommended that we take Kaden to the emergency room at Childrens' Hospital. So we did. That was pretty much a waste of time as they checked him out and said, "He looks fine. Can you describe the seizure again." I respond, "Okay, but I have already told the first four doctors that came to look at him." The good thing was that he checked out okay. The ER doctor spoke to neurology and said we could go home and just follow up with Kaden's pediatrician and neurologist. They did give us a prescription for an emergency seizure medication in case Kaden were to have a seizure lasting more than five minutes. We make it home by about 11:30am and speak to the neurologist on the way home. She tells us if Kaden has another seizure or we see any signs that Kaden is having trouble that we should bring him back and they would admit him into the hospital.

By the time we get home Kaden was doing well and he ate a big lunch. Miki decided to take advantage of all of us being home and took Kaden to pick up his new glasses at the optometrist. While there, Kaden has another small seizure. We call the neurologist and by 3:00pm we are back in the hospital. Kaden had a third seizure right when we got into his room which everyone got to witness. The weird thing is that during the second two seizures Kaden was coherent and answering questions. In fact, in typical Kaden fashion after the third seizure that lasted about three and half minutes Kaden says, "all done". Like he's apologizing for it. He's such a tough kid.

They decided to forgo the EEG on Monday and gave him a large dose of Phenobarbital to get the seizures under control. This however knocked him out at 5:00pm and he didn't wake up until 7:00am the next morning. Because it's a sedative, Kaden was rather ill on Tuesday and couldn't keep any food down. Finally Tuesday night he ate a good dinner, kept it down and got another good night's sleep. The doctor's switched him over to a drug called Keppra which is much more mild than Phenobarbital. Today he was still pretty out of it but much better than yesterday. We were able to come home about 11:00am this morning and Kaden seems better just being at home.

So now we have a lot of follow up over the next couple of weeks. The doctors feel the medication should control the seizures and life will move on. I think Kaden just likes to prove how tough he is from time to time. Well... that's all for now. I have been saving up all of the fun stuff we've been doing this summer along with an upcoming surprise set for October, so I will post again in a couple of days with some fun stuff. Thank you to everyone for your thoughts and prayers. We are so lucky to have friends and family who give us so much support and love.

Well, it's been a while. Nothing much has changed. We've kept plugging along with therapy and dosage increases for Kaden's Baclofen pump. HIs tightness is a little better. While the loosening of his muscles has not necessarily helped with function, I do think it has made him a bit more comfortable. Hopefully we will get to the right dosage of medicine and things will start to progress from there.

About three weeks ago Kaden did an intensive 4 days of therapy with a different type of therapist. The therapy is called the Anat Baniel Method or ABM. It is related to another form of therapy called Feldenkrais. These are not considered mainstream methods of therapy but practitioners have had considerable success with children who have brain related diseases and injuries. Kaden did 2 sessions per day for 4 days and he seemed to like it. We didn't see overwhelming results but we really liked the practitioner, Pati.

Today we drove down to Chicago and met with another practitioner who is sought after all over the country. Her name is Marcy and Kaden did very well. After just two 45 minute sessions, she had him loosen up a bit and we can really see how this might be beneficial for Kaden. We are going to continue with Pati here in Milwaukee, at least for 3 or 4 months, and see how Kaden responds. The difficult part will be discontinuing his PT and OT at the current facility we use. They have been wonderful to Kaden and to our family but we really feel it's time to change things up a bit.

Kaden also had Make a Wish come to see him and the whole family two weeks ago. He has been granted a wish! He chose Disney World as his first choice and the San Diego Zoo as his second. I think Kylie and Jacob are pulling for Disney World. Kaden will be very popular with his siblings for quite some time I think. Either way, it will be a great adventure for our family.

We all had a great 4th of July! Very busy. Fireworks, parade, pool party. I swear the kids could have slept for a couple days straight. I know Miki and I could have.

Camp is right around the corner for Kaden and Kylie. This is the 1st year Kaden will have just a helper and not mom, dad, or a grandparent with him. I think he will handle it well. Especially if he gets a cute girl as a helper. He is such a flirt!

So, that's all for now. Should be an interesting couple of months. We won't wait so long to post next time.