Tyler Kahle - entry written by Rob Bonney

Sun, 19 Apr 2009 15:29:00 -0400

Our prayers go out to the Kahle family. Debbie I know that Shona has talked to you and we include a link to Tyler's video with your kind permission.

After watching the video about Tyler Kahle (see Marfan News page) it makes me realize how important it is to educate the people around us about Marfan Syndome and Thorasic Aortic Aneurysm and Discection.

Some things we can do as parents:

- Make sure the school nurses are aware of your childs condition.

- Educate the local rescue squads about Marfan Syndrome and Aortic Aneurysm and Disection. CHANCES ARE THEY KNOW VERY LITTLE IF ANYTHING AT ALL.

- Educate the local hospital Emergency Rooms. We were amazed to discover how little our ER knew about Marfan Syndrome.

- Have your child wear a medic alert bracelet.

- Keep an envelope containing medical history, medications, etc ready to go at a moments notice.

The loss of Tyler Kahle teaches us that education and awareness is key in keeping our children alive and well.

What marfan syndrome means to me

Sat, 03 Jan 2009 16:02:00 -0500

I think that marfan syndrome really sucks for people like me because I used to participate in a lot of sports and now I can't do hardly any. I have to take Atenolol pills twice a day to slow my heart rate down because sometimes just sitting down it is 124 bpm and it is only supposed to stay at around 80 there is a big difference in those numbers and I don't know how it gets that high at all. I have many doctors appointments because of it. They use a heart monitor on me and they use an EKG and a whole lot of other weird stuff. The bad part on marfan syndrome is that it affects your whole body and is different for every one. At school they had an assembly about me because no one there knew about it and a very nice man called Bruce Klein was able tell almost the whole school what it is about and how it affects me and showed interviews of other people who have it. The last thing I have to say is that I think that marfan syndrome is really scary to have.

My Make-A-Wish trip to England

Sat, 03 Jan 2009 13:56:00 -0500

Because of my Marfan Syndrome my parents applied to the Make A Wish Foundation and I was lucky enough to be accepted. My wish was to visit my grandparents in England who I had not seen since I was three years old.

I would like to thank my wish granters Cricket and Char and everyone else who helped make my wish come true.

It seemed like it took forever for my wish to happen, we had to get all our paper work and passports and stuff in order but on Sunday September 14th 2008 we were on our way!!!!!

Check out the photo gallery for a small selection of pictures from our trip. We actually took over 1200 pictures!!!!

Day 1

It was raining horribly in Antioch on the day we are to leave; we couldn't have picked a better day to be getting out of the country!!!! A Lincoln Navigator shows up to take us to the airport - woohoo - we are traveling in style. A great way to start our long journey.

At O'Hare Airport the check-in lady tells us that because of the bad weather we would miss our connecting flight in Philadelphia. She is kind enough to switch us to another airline that has a non-stop flight. This is going to save us about four hours! Awesome!!!! We have to do all the yukky security stuff including taking off our shoes and belts as we go through the airport. Finally we are on the plane and on our way. I suck on hard candy but the pressure still hurts my ears as we take off. We got to eat dinner and breakfast on the plane and watch a couple of movies. My little brother Evan slept for most of the flight.

We land at Heathrow Airport in London and have to wait in a long line to get our luggage. Because my dad has a British passport we are all able to go into the short line for customs. One out of the airport we pick up our rental car. It's a Ford Galaxy minivan - kinda like a Honda Odyssey - very cool. As we are driving to our hotel there is this horrible burning smell. Turns out that my dad was driving with the parking brake on! Duh!!!!

We get to our hotel - The Copthorne Tara Hotel, it's in a suburb of London called Kensington. Kensington is where Princess Diana used to live. We have connecting rooms - mom and dad in one, with me, my brother and sister in the other. We are very tired from our long journey so the first thing we do is take a nap. After our nap we go for a walk. The first thing Alanah and I find are big red telephone boxes so we go inside to check them out. Looking for somewhere to eat we find a breakfast cafe called Giraffe. The food is good and comes with little toy Giraffes :) After we eat we take the underground train and go to Hyde Park. Everyone enjoys the walk and we check out Speakers Corner. This is a famous London landmark where anyone can stand up and talk about anything they want as long as they are not breaking the law.

We head back to the hotel and are very tired so we go to bed because tomorrow is going to be a very busy day!!!

Day 2

We woke up early because we had to be at the Tower of London by 8:00am. Make A Wish had arranged for us to have a private tour. We were going to take a taxi from the hotel but the concierge said that it would cost about $100 to go across London and would take forever, so we took the underground train. It was busy but got us there quickly. When got to the Tower there was a Yeoman Warder waiting for us. Yeoman Warders, also known as Beef Eaters are the guardians of the Tower. He was to be our first guide and showed us around the grounds. He told us about the soldiers that live and work at the Tower, guarding the Crown Jewels. The Crown Jewels is the collection of jewellery that belongs to the Queen. Much of it was gifts from other countries. He also showed us the ravens and said that if the ravens ever leave the Tower then the kingdom will fall and the country will be doomed!!!! Our second guide took us inside and showed us all the jewels. Then we had a third guide who took us into the armory and showed us all the armor and weapons. It was very cool. They gave me some books about the Tower and the jewels and everyone who works there had signed them for me.

Click here for a kids tour of The Tower of London

We grabbed a quick snack before heading back to the underground. Our next stop was a river cruise. We had tickets for the Silver Barracuda and today was her last cruise of the season!!! The cruise lasted about an hour and we went up and down the river Thames and got to see the sights. While on the boat we had lunch. There was lots of food so we took some of it with us. After leaving the boat it was a short walk to the London Eye. This was the second reason I wanted to come to England, to go on the Eye. It is one of the largest ferris wheels in the world!!! We had to wait a little bit because there was a problem with the tickets. The security guard was not being helpful. My mom sorted it out and we were soon flying on the Eye!!!! There was another couple from America also riding with us. It takes 30 minutes for the Eye to go around once. When you are at the top you can see for miles and miles. It was soooo cool.

Click here to explore the London Eye

After leaving the Eye we walked along the river and got to see lots of street theatre. All kinds of people performing trying to earn money. We hopped back on the underground train and it took us to a bus stop where we got on an open top bus tour that lasted two hours. The bus took us all over London and showed us all the famous places. After the bus tour we went for a walk and found a really nice Italian restaurant to eat dinner. The food was awesome. We have the menu at home as a souvenir. After dinner we went back to the hotel to check out. Then is was an hour and a half drive to Oxford to check into our next hotel, The Holiday Inn. This would be the base for most of the rest of our stay in England. It was 10:30pm by the time we checked in and got our luggage into the rooms. We were really hungry so went to see what was available. The restaurant was closed so we ordered food at the bar. This was when we realized how expensive this place is. We ordered four plates of fish fry and five drinks. The bill was $120!!!!! Needless to say we didn't order from the bar again. After dinner we were off to bed. It had been a very long but awesome day!!!!

Day 3

Today we were looking forward to taking it easy after the last two days. We got up just in time for breakfast then it was off to Grandpa and Grandma's house. Our hotel was just a few minutes from their house so it took no time at all to get there. I hadn't seen my grandparents in about nine years so it was like seeing them for the first time. They were very happy to see us. Grandma Polly had some errands to run so my Mom and Alanah went with her. Me, my dad, and Evan stayed at the house with Grandpa Johnny. I showed him the pictures we had taken so far and my books from The Tower of London. Evan spent most of the morning asleep. Grandpa Johnny was telling me stories about my dad. When the others cam back from running errands we all went into the garden and played some games. Evan found a wheel barrrow and had great fun pushing it around. We all threw soft building blocks at each other. They have a cat called Percy who was half asleep on the roof of the garage watching us the whole time. The weather was great. It had been raining non-stop in England for weeks but it stopped the day we got there. Later in the afternoon me, Alanah, and dad went back to the hotel for a swim in the pool while Grandma Polly and my mom worked on dinner. Grandpa was busy keeping Evan amused. We got back from our swim and ate dinner, which was awesome! We spent the rest of the evening hanging out at the house before going back to the hotel.

Day 4

More to come soon :)

My Blog

Tyler Kahle - entry written by Rob Bonney

What marfan syndrome means to me

My Make-A-Wish trip to England