Our family loves Sophia and her family. Sophia is really awesome. She loves words! When she was little, like 4, she was asking for her special morning “concoction” and used the word disenfranchised in sentences (I am still not sure what that means but apparently she used it correctly.) We have known them for a long time, probably since before her younger sisters were born, definitely before her youngest sister was born. Her Dad, Alex, wrote a recommendation letter to the Naval Academy Wrestling camp which helped me get a scholarship there 2 years in a row. Her Mom, Melissa is really nice too. So, here she is, Miss Sophia.. There is no doubt she actually wrote her story below.
By Sofia Napoli
Hello! I am Sofia Napoli. It’s great to meet you! I have a syndrome called Williams Syndrome. I don’t really think about it all the time, but I have it. I heard you are asking for stories about individuals with Williams Syndrome. Since I am one of those individuals I am writing to you!
I have curly dark brown hair, I am 10 years old, in 4th grade (about to go to 5th grade) and have two sisters. I am typing this letter, but not very fast. Also, I make some mistakes. I’m very, very nice to others. I cooperate with others. I also like to hang out with my friends and have fun. It can be fun having Williams Syndrome! I’m also a lover of cats. People say I’m really social.
Kevin, I saw you on the news! I really appreciate you wanting to tell people about Williams Syndrome. Not a lot of people know about it. I think it’s really great thing you are doing and it is good to exercise! You also have the cutest little dog!!!
It’s a good thing that you want to keep awareness for Williams Syndrome and your brother Jacob (don’t forget him) he’s always there for you! I wish we could be friends when you get back! I look forward to seeing you at the next picnic! Also, Jacob is a nice brother, don’t you think? I wish you good luck traveling and beware of the woods because they can be very creepy!
Also, I am sending you a picture of my winning first place at tennis! Good bye now and keep on trucking!
Love your friend, Sofia!!!
It was a easy ride today, most of the day was down hill. The pictures below are what I woke up to and what most of the ride looked like. Santa Maria CA is a nice town. I used the last 2 spares (must have run over glass I did not see) and then just down the street was a walmart so I restocked on spares and food.
About 5:30 or so I made it to the Blair home. They had pulled pork, it was so good! I was tired and really appreciate them hosting me for a night. Bradley, Bennett and Brandon are awesome! Pics below.
The weather is cooler already, mid 70’s is the tops, the days seem to start and end in the low 60’s. Perfect for riding!
A must see destination is the Big Sur. It is about 130 miles, probably 2 days ride because of the hills.
That is what I woke up to on 7.9!!!! Lake Cachuma, CA
Lake Cachuma, CA 7.9
Maryland is represented at the CA vineyards 7.7.14
Introducing Daven… World meet Daven, Daven meet the world! A single word comes to mind when looking at his picture – Dapper! Hey Daven – real men wear pink! High Five man!!!
“Daven lives in New Mexico. He is 9 with a love and passion for technology. He loves watching YouTube videos especially mowing videos. Daven is also a proud big brother to his 9 month old baby sister, Brynn. The bond between the two is already unbreakable.”
California is AWESOME!!! I don’t know what I want to do for sure when I am finished this trip, but I can see myself being a ranger in these “parks”.
It was a BIG climb today, about 2,000 feet in less than 10 miles, pretty much straight up! Then coasted down for a few before it flattened out. Hitch was tired at the end of the day : ) We camped at Lake Cachuma Park. Tomorrow we head to Oceano where a The Blair family will host. A shower and laundry is high on the priority list! I can’t blame them if they hand me soap and a hose OUTSIDE.
Tiffany offered to set up a facebook page for the ride. Thank you! It is being worked on now so when it is up I will let you know what it is. The info will probably run parallel to what is here. Just thinking for awareness it can spread faster on fb than a single site.
OH, a lot of pictures were added to the “7.6 Convention Picture” post. Mostly from the San Diego Zoo and as I was saying goodbye to everyone. Enjoy
A snippet of information/education for today… People affected by WS have great difficulty with Spacial Relations. This is evident when drawing. However, this adult man was able to draw a firetruck with parts in the correct place (not just randomly placed on the page). The wheels are on the bottom, ladder on the top. This is a very good drawing!!!
That was a BIG hill she climbed… should say she sat in the box for.
The NCR at home runs from Baltimore County to York County PA. “NCR” stands for North County Rail (trail).
EVERYONE should do a bike trip in CA…
Yeah, a “little” hilly. Cant beat the views though…
Lake Cachuma 7.8
I have learned of 2 more babies that have been given their angel wings in the past 2 weeks. It is really unbelievable! This makes 4 since the trip began and 5 including a teen in March.
This is all I know of the most recent 2 from fb:
Rüzgar from Istanbul – “Another angel has passed away today :(( i am so so sorry, he was only 4 months,and has a twin non ws sister, because of a sudden worsening in his narrowing-after an open heart surgery he spent 4 days in the intensive care unit, and passed away today”
Diego from Mexico – “There was another WS angel that passed away. He died because of a careless anesthesiologist. It happened in Mexico…this past June we lost in total 4 angels. Now his mom has opened a page called “Justice for Diego” and wants our support. If your could go to this page and like it she would appreciate it.”
WS individuals must have a cardiac anesthesiologist present when surgery is required because of an elongated QT. I obviously am not a doctor and do not know what that is, but doctors and nurses know. More information on anesthesia concerns can be found on the WSA website, in particular this link http://www.williams-syndrome.org/doctor/anesthesia-concerns
Here is a poem Xavier’s mom had posted (Xavier was laid to rest June 27)…
What a way to start the dedications again! Introducing Ms Lilly! Can’t you imagine just sitting listening to her tell a princess story or sing Frozen? Do ya think her mom has heard the song once or twice? BHAHAHA. Our moms have known each other for several years, have seen each other at the walks in Frederick and other picnics in the MD/DC area. Amber, her mother, did an amazing gymnastic feat to save Lilly from getting even a scratch or scrape. It is amazing what parents do instinctively to prevent their kids from getting hurt.
“Lilly is an energetic 6 year old! She loves school and her friends, but most of all she loves to dance, talk, and play in the water. Dance parties can pop up anywhere, including a local Dunkin’ Donuts. Lil heard a song she liked and got everyone in the store to dance with her. She also loves to talk on the phone or to anyone in sight. While standing in a long line, Lil greeted everyone and got to know them. At one point, a gentleman in line shouted “Lilly for Mayor!” We couldn’t agree more.”
The weather out here is really incredible. CA is a “little” hilly so I am not getting as many miles in each day as on the east coast or in the middle of the country. That’s ok though, more time to take in the sights.
Hitch seems to be ok riding again. She has lots of toys so I wear her out with the ball when we stop. She is really really fast. Guess that is the min-pin in her. The pic below is near where I camped at Lake Casitas Park.
I met another cyclist today and we rode together for maybe 10 miles. He was pretty impressed by the cause and what the WSA does for its members. Later in the day at a pull off rest stop an motorcyclist rode over to me and we got to talking. He gave some great suggestions about riding the PCH and in particular in the Big Sur. I can’t wait to get there but and am loving the journey on the way to each destination.
My friend from home, Dan, is going to join for the venture back to MD. Funny how things work out… when we were in elementary school & in scouts we talked about when we got out of school to get a beat up camper and do a cross country trip. The plan now is that Dan will ride the bike and I will run pushing the Thule Cougar II jogging stroller (yes another plug as they donated it, so great!)
Lake Casitas Park, CA
I had a great time at the convention. This is the 5th convention I have worked in the daycare rooms. I love the babies!!! Renee and I did volunteer with the teens on Saturday when they went to the Aquarium. That was good, but I think I will stick with the baby room for the whole convention next time.
Cool things happen during the convention. The GANG (21-30 year olds) went on a excursion for whale watching. The whales must not have surfaces in their “usual” spots so the captain of the boat went to where he thought there were dolphins. They were there – a school of about 2,000 of them!!! They were jumping all around the boat! Jake said it was “really awesome!” As with most touristy things like this they take pictures and sell them to the visitors/guests. And they did this here too. But, a big but… the Captain and crew so fell in love with the group they matched the $ collected for the pictures and donated all of it back to the WSA!
I had a great time with Tiffany, Megan, Linda and Charlie in Palm Desert, and with the Jacobs and Toia families in Vegas. I am sooo grateful for Linda and Charlie to have arranged the van from Vegas and for Tiffany for the ride out of the desert. Below are pics of the desert from Mom on the plane. You can see that it would NOT have been good to ride it. Not at all. And the road is in the pictures even if you can’t really see it here, it is.
It is good to be riding again!!! California drivers are NUTS! The weather and views almost make up for it. Malibu state park is amazing, worth the $45 camping fee. There is a great swimming hole. Hey Julien, Gabe and Kev, Dan & Jay – this is the cliff I jumped off today. Multiply Prettyboy cliff by about 3 (not that any of us would swim in Prettyboy)
Some other campers, the nature’y type invited me for vegan burgers and salads. REALLY AMAZING! I don’t think it was the hunger saying that either. Even Hitch ate it!
The jogging stroller arrived at the Hyatt (where the WSA National convention was) on Monday, we all left Sunday. The Palasay family in Oregon will accept it and said it is OK that Dan and I meet there for the next “leg”. Thank you Tiffany & Linda for the UPS label!
Be sure to check out the convention pictures (as well as San Diego Zoo and just random pics from Garden Grove) on the 7.6.14 date. I just put them all on one day. If you have a twitter you can see other people’s pics at #WSA2014
7.7, the first clouds I have seen in WEEKS
CA 7.7. Nice bike lane here!!!
Guess which landing I jumped from? Really, take a guess : ) Malibu State park 7.7.14
The pictures are broken into a couple categories. The first is the San Diego Zoo where we were on Monday 6.30. Then random pics from Garden Grove (Anaheim) and then pics from the convention and lastly the farewell. Enjoy…
Day 1 – San Diego Zoo
The zoo is also a botanical garden with over 25,000 species of plants!
Baby, baby momma and half brother who is 6 months old
Baby was born 10 days before at 160 lbs
Reminded us of Jarasic Park
Staring Hitch down
The lama DID NOT like Hitch. When they saw her they all started screaming and ran after us so they could keep an eye on her.
Random Pictures around Garden Grove CA –
Beautiful Cathedral in Garden Grove CA 7.3.14
Breakfast in Garden Grove
Palm tree shade, Garden Grove CA 7.5
View from the pool in Garden Grove CA
Hitch was great with EVERYONE! –
Grandpa L. We just love him and his wife!
Beautiful faces at the convention –
Jake, Megan, Justin and Tiffany
waiting for the bank to play at the party
Little Louise, sister and dad… I stayed with them in Alabama
Getting ready to hit the road on 7/7 –