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Treacher Collins Syndrome Trip: DL SFO-ATL-BWI RT

Wed Aug 29, 2007 1:14 pm

Background of Trip

This trip was a very special trip for me, as I was going to meet other people with my very rare craniofacial syndrome, Treacher Collins syndrome. This syndrome, a rare autosomal dominant disorder, results from failure of the skeletal structures of the face to form during embryonic development. I have a particularly severe form of it (no ears, chin, eyesockets, cheekbones, etc, as well as cleft palate).

Shortly before I moved to San Francisco from my home in Fort Wayne, AT Macedonian Airlines (Greece)">IN, to begin my studies at UCSF, I had attended the Children's Craniofacial Association (CCA) Cher's Annual Family Retreat (yes, this was started years ago by Cher herself!), which was held in Salt Lake City, UT. Soon after I had gotten back home to Fort Wayne, someone at the retreat who knew me sent me an email asking me if I would like to meet some people in Maryland. This was to be a get-together of families with kids with Treacher Collins syndrome, to meet an 8-year-old Jamaican orphan boy with Treacher Collins syndrome. He was to come to the USA for help with his craniofacial deformities, and this gathering was to introduce him to others (like me) with TCS. They especially asked me to come, as I was the adult with TCS.

So, shortly after I moved to San Francisco, and after I got settled in at UCSF, I went ahead and booked my airline, hotel, and rental-car reservations. On, I booked Delta SFO-ATL-BWI roundtrip for August 9-13, and I booked the Best Western in Salisbury, MD (where the gathering was) as well as the Red Roof Inn at BWI. I also booked my Avis car rental.

The big day came (Aug. 9) for departure. That morning, before I left for SFO airport from my apartment at UCSF Mission Bay, I got an email from the hostess of the gathering that unfortunately, the Jamaican orphan with TCS was not able to come to the USA--because his visa was denied! However, she went on to say, the gathering would still go on as planned--especially because I was coming. As you shall see later on, this trip was not a waste at all despite the absence of this poor boy.

This trip, as you shall see, was bedeviled by many Delta flight delays.

Thurs. August 9: DL 650, SFO-ATL, Boeing 767-300

I arrived at SFO (after driving down US 101 straight from UCSF Mission Bay) at around 10:30am, parked in long-term parking, and checked my big blue Samsonite in at curbside checkin at the Delta terminal (SFO terminal 1). I already had my boarding passes (from online checkin the previous night). It was at security that I found out about a new rule, regarding breathing machines (I use a CPAP machine for my sleep apnea): Breathing machines must now be removed from luggage for separate scanning. Before this, my CPAP had always gone through x-ray inside my rollaboard carryon bag (much easier that way than for me to carry it; it's kind of heavy). Now I had to remove it from its bag and send it through separately, along with my laptop computer. The TSA agent was apologetic and told me that she had been seeing a lot of CPAP machines going through security. So there was quite a bit more complexity for me--and a lot more stuff for me to manhandle before and after security!

After going through the security gauntlet, I went straight to my gate (C-46) to await boarding of my Delta flight to ATL. Fortunately for me, as I love widebodies, there was a 767 there for my flight. After a couple of hours' wait in the crowded lounge, it was time for boarding. I boarded with group 6 and found my portside window seat (I think it was 34A). After the safety-demonstration video on the bulkhead screen, we departed the gate on time. It was a lovely, sunny San Francisco afternoon! We taxied out to SFO runway 1R, and with a roar, we departed over the Bay, heading northeast. I could see Monster Park, US 101, my apartment tower at UCSF Mission Bay, AT&T Park, and the Bay Bridge from my window.

The flight was nearly 5 hours. We headed northeast over northern California, then eastward over the western states and the plains states. I saw the mountains gradually give way to plains and flatland, over the breadbasket region. The inflight movie was Shrek 3, but as I have no ears, I could not use the headphones. Instead, I read through the Delta Sky inflight magazine. I was also reading an Independence Day: ID4 "sequel" novel, War in the Desert. This was a fascinating novel that took place at the end of the worldwide counterattack on the ID4 aliens and their huge, 15-mile-wide City Destroyer flying saucers (from the hit 1996 movie). This novel took place in the Middle East, when the alien City Destroyer destroyed Jerusalem and proceeded to attack Mecca. After the huge flying saucer went down outside of Mecca, the book went on to describe, in fascinating detail, the inside of the city-sized flying saucer--its creepy organic architecture, technology, alien breeding rooms, power source, etc. The book was un-put-down-able! (I am very fascinated by aliens and UFOs, especially those in ID4.) The surviving aliens were going to release (stolen) biological weapons in a last ditch attempt to destroy humanity, but as all Hollywood movies and books end, they were stopped in the last minute.

The "meal" on the plane was just snacks. I had a snack box, as well as Fresca. Delta apparently recently started serving Fresca grapefruit soda (my favorite!) on board. I was tickled! I have always loved Fresca, as I love grapefruit juice.

We arrived over Atlanta around 8:30pm local time. As we were descending over downtown and suburban Atlanta, I was remembering back to my "alien abduction" experience  Wink from my 1993 high school trip there to look at colleges in the Southeast. (The "experience" was really a very vivid, realistic dream of being kidnapped--right from a bathroom in the underground mall in downtown Atlanta!--by aliens and having a needle put in my eye! Ouch! But when I described it to family members later on, some of them actually believed it. So according to family legend, I have actually been "abducted"!  Wink )

During descent into ATL, I was surprised at how many baseball fields (sandlot, school, others) were scattered all over Atlanta; I had never seen so many clustered in one area.

We landed at a very busy ATL, on runway 9R, and taxied over to terminal T. By that time (8:40pm or so) my connection time was getting tight (the connection to BWI was to leave at 9:35pm from terminal A). As soon as I could get off the 767, I hurried down councourse T to the underground train and got to A.

I made it to my connecting flight's gate in time.

Aug. 9: DL flight 990, Boeing 757-200, ATL-BWI

We boarded the 757 on time and departed the gate a few minutes later, but to my total surprise, after we had taxied out to one of the southern taxiways, we suddenly stopped--and shut off the engines! The pilot soon came on the PA and later, walked down the single aisle, to announce that due to weather delays in the Northeast, the flight would be delayed over an hour and 20 minutes. Flights to the Northeast were backing up with delays due to the weather there. That included BWI. So we sat on the taxiway south of the 2 parallel southern runways for over 2 hours before we got clearance to depart. So the cabin crew decided to turn on the movie (yes, Shrek again) for the duration of the delay for our entertainment. I was getting very nervous--because I was going to be very late into BWI and as a result, I was going to be even later for picking up my Avis rental car at BWI (and even later still for my motel at BWI, the Red Roof Inn). I called Avis on my cell phone to inform them of my expected very late arrival; they assured me that my car would still be available. Somewhat mollified, I went back to reading my Independence Day: ID4 sequel novel, where I explored further the fascinating interior of the aliens' ship and their technology.

Also, I had had nothing substantial to eat since my big breakfast early that morning in San Francisco--peanut butter and applesauce toast. Nothing other than the tiny snack box contents. Due to my TCS, I am significantly underweight (only 90lbs for my 32 years of age, and a correspondingly skeletally-thin body) and thus malnourished, so I need to eat as much as I can. My appetite, as much as 3 times a normal person's, is legendary in my family. So I was quite famished!

After the 2+-hour delay, we finally started the engines and departed ATL. By that time it was around 11:00pm ATL time, and my flight would not get into BWI until about 2:00am. We arrived in BWI around 2am after a bumpy flight. I spent about one and a half hours, after collecting my bag, waiting for a car-rental-facility shuttle bus to come. Many car rental shuttles were full, as the airport was still packed even at this late (early?) hour (because of all the delays). Finally one came, I got on with my luggage, and got to BWI's consolidated car-rental facility, where I waited another hour or so in line to collect my car rental documents. Finally, at around 3:30am, I collected my "compact" car reservation--and found out, to my pleasant surprise, that it was actually a Chrysler PT Cruiser convertible!

After getting lost trying to get out of that area to find my BWI Red Roof Inn, I made it there at around 4:30am and got to bed--very, very late! (Still no food until next morning!)

Friday, Aug. 10-Sunday, Aug. 12: Salisbury, MD, for TCS gathering

Friday morning, at around 11am or 12pm, I woke up, still jet-lagged and worn out from the previous night's delays. I checked out of the BWI Red Roof Inn and went looking for a restaurant still serving breakfast. It was not until I arrived somewhere near Annapolis, after getting off I-97 to US 50, that I found a Denny's--at 1:00pm!--and had a very late breakfast, more than 24 hours after my last meal! Needless to say, I had a huge breakfast of pancakes, sausage, etc. along with a tall glass of cold grapefruit juice. After "breakfast", I headed on over to Salisbury, MD, a 100-mile drive along US 50, over the Chesapeake Bay Bridge and on into the eastern side of the state. I made it to Salisbury at around 3:00pm and located my Best Western motel, where I stayed the next 2 nights.

Salisbury, MD, is a beautiful small city (or large town, shall I say?)--full of lovely antique malls (which I love to browse in), historical architecture, and even a Minor League baseball team (Delmarva Shorebirds, A-Baltimore Orioles) Before I went to the gathering Saturday, I spent the whole morning "antiquing". I scored a 1984 TIME magazine (Men of the Year issue, Ronald Reagan and Yuri Andropov), as well as a perfect, working classic Tickle Me Elmo! Both were real bargains! I also discovered Salisbury has a tiny regional airport--served by one airline, US Airways Express (Piedmont), using DHC-8s. The terminal was a lovely New England style structure!

That weekend I attended the gathering at the home of the host family, who incidentally had a little daughter with Treacher Collins syndrome. Several families attended and shared stories about raising their kids with TCS, and I got to share so much with them about my life with the disorder. Even though the Jamaican orphan boy with TCS couldn't come (his visa was denied for some reason), we still were able to enjoy a time of sharing and cooking out. I got to play the piano for them, as well as sharing my life with them.

After the gathering was over that Saturday, the host family invited me to hang out with them the rest of the evening. Their daughter, with TCS, aged 9, really enjoyed having me as her new friend (we hit it off immediately); I was like a father to her in her own eyes. The family and I watched Star Trek V on DVD that evening too. The dad really loved my rental PT Cruiser convertible!

The next day, Sunday, I came back to their home that morning, went to church with them, and spent most of the day with them. It was such a lovely time, just sharing the weekend with a lovely family and being a "hero" to their daughter!

All too soon, it was time for me to drive back all the way to BWI from Salisbury to catch my flights back to ATL and SFO Monday. Late that night, at BWI, I checked into the BWI Red Roof Inn for the night.

Monday, Aug. 13: DL 1281, BWI-ATL, Boeing 757-200

I checked in with Delta for my homebound flights at the counter, then went through security (again, with my laptop and CPAP machine fully removed from their bags), and went to gate C-16 to wait for my flight.

While I was waiting for my flight, I shot this photo of an unusual, rare BAC1-11 departing BWI; it had an unusual pointed nose. Whose is it, and what is it for?

When it was time to board, around 2:30pm (for the 3:00 flight to ATL), a delay of an hour was announced--due to "mechanical problems". I was getting very worried--because my connection (ATL-SFO, flight DL 69) was due to leave ATL at 5:40pm! So I went up to the gate counter and to my relief, was booked onto the next available later flight. But that wasn't the end! After we boarded the 757 (already an hour late), the delay was extended yet another hour--it was the portside engine! We did not leave BWI until around 5pm. By the time we arrived at ATL, even my alternate flight had left. So I ended up getting on the 2nd alternate flight in a row that day. We departed BWI and landed at ATL already 2 hours late. Upon deplaning, I went right to the ticket information center in the middle of concourse A at ATL and got my new boarding pass--for the 2nd alternate flight (my 1st alternate had left already).

Mon. Aug. 13: DL 163, ATL-SFO, Boeing 767-300

My "alternate-alternate" flight was DL 163, the 8:30pm ATL-SFO. To my pleasant surprise, instead of a 757 (as my original ATL-SFO flight had been scheduled to have), there was a 767! I shot this lovely sunset photo of my 767 at the gate at ATL:

This time, we boarded right on time--and the 767 left right on time. I had an aisle seat (12B) because I had gotten on this flight stand-by. During takeoff, I could see the whole ATL terminal complex laid out. It would have made a lovely photo--a lovely ATL overview from the air! It was quite dark by now, and the flight, around 5 hours from ATL to SFO, was quite uneventful. The movie was Spiderman 3[/b], a MUCH better movie, IMO, than [i]Shrek 3 had been!
During descent into SFO over the Bay, I was treated to a galaxy of city lights stretching all along the bay shore from San Jose all the way up to San Francisco. We landed and taxied toward the terminal complex at SFO, and waited behind a Song 757 and Delta 767, who were also waiting for gates to open up. We had gotten there a bit early, and there was a bit of a traffic jam around the Delta concourse waiting for gates to open up.

After deplaning and collecting my bag, I rode the shuttle to long-term parking and drove "home" to UCSF Mission Bay.


Despite the fact that our expected guest from Jamaica could not make it to the gathering in Salisbury, MD, the event was nevertheless a wonderful sharing, family time. All the families there wanted to know more about my life story with Treacher Collins syndrome (I had been especially asked to come, as a special guest), so I got to share with them. Also, I got to spend the whole weekend in the company of a wonderful host family and their cute little daughter (also with the syndrome), who considered me a special friend, or almost a daddy to her. All in all, it was actually a special, and successful, trip. Someday I would love to go back to Salisbury, MD, and visit this family again. They are still trying to get the boy from Jamaica to come up here to get help for his Treacher Collins syndrome--he really needs it. I told them, as soon as this boy could come up here (if his visa could ever get approved to come to the USA), I would like to come back and see him (which was their original plan, anyway, that I was to see him and be the adult example for him).

Despite all the flight delays, and aggravations, and being so late getting to BWI (and back to ATL), I cannot fault Delta at all. In fact, they showed exemplary customer service. They were so apologetic about the numerous delays that stacked up on our flights, and in the case of the delayed ATL-BWI flight, the pilot personally came down the 757's aisle and explained-in person-what was happening and kept us up to date. The airline was also very good at making sure we all got alternate flights the day our flight from BWI-ATL was severely delayed. I still plan to fly Delta in the future--I LOVE their 767s, and I have always appreciated the excellent customer service they have shown me in the past (I have flown DL several times across the Atlantic between CVG & LGW, when I was attending university in London the last 3 years). I'll never forget the cute DL stewardess who knew me by name on a LGW-CVG roundtrip back during Christmas 2005!  Wink

I will praise thee; for I am fearfully and wonderfully made... (Psalm 139:14)
Posts: 268
Joined: Sun Jul 08, 2007 8:13 am

RE: Treacher Collins Syndrome Trip: DL SFO-ATL-BWI RT

Wed Aug 29, 2007 2:28 pm

Nice trip report! Glad to see you enjoyed your trip, and it was really cool to see you helping others with your condition!

Quoting SmithAir747 (Thread starter):
While I was waiting for my flight, I shot this photo of an unusual, rare BAC1-11 departing BWI; it had an unusual pointed nose. Whose is it, and what is it for?

Looks like a Northrop Grumman test plane to me. Nice find too, I wish their were more of those beautiful One-Elevens around, but alas they are a dying breed.

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"Reading departure signs in some big airports reminds me of the places I've been"
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RE: Treacher Collins Syndrome Trip: DL SFO-ATL-BWI RT

Fri Aug 31, 2007 4:28 am

A very personal and touching TR. I am glad that you've again had a good time on DL.
And i think that you should stay in touch with that little girl and her family.

greetz from BSL: Markus
They loved to fly and it showed..
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RE: Treacher Collins Syndrome Trip: DL SFO-ATL-BWI RT

Fri Aug 31, 2007 6:06 am

Welcome to Maryland and it looks like we treated you well!

Glad to see that you made a decision on where to continue your studies.

Northrop Grumman has a large radar testing facility at BWI. We've also seen the souped up 757 here too.

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I live in the US but my heart is in Jerusalem!

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