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.