quinta-feira, 24 de dezembro de 2009
sexta-feira, 18 de dezembro de 2009
PESSIMIST IN THE MORNING AND OPTIMIST AFTER A RUN
Today's quote in Runners World «A pessimist sees the difficulty in every opportunity, an optimist sees the opportunity in every difficulty.» is a phrase by Winston Churchill.
If you were to ask me what I think about when I run, most times I would have to answer «I don't know.» When I run it almost seems like time passes through me while I'm in a far away place...and when I finish I sort of land back in reality feeling refreshed and ready to take on the day.
Today as I looked around the gym at all the people running, biking, rowing or skywalking, I wondered how much energy we could all produce.
If we could use this energy maybe in the future we can get the kids [and parents] to run around the house to get enough energy to power the TV to watch their favourite show. The family would be healthier and more active, the electricity bill would be lower and above all a lot of people would stop watching so much Tv!!!
Freaky thoughts I know, but an hour and 2 minutes later my tempo run was over and now I realize that I am a pessimist when I wake up and an optimist after my morning run....When the alarm goes off I see difficulty in very opportunity to run before work and after the run I realize that each difficult run is an opportunity to get better at it.....
And speaking about running.....I'm running late to head home for a well deserved weekend and of course last minute Xmas shopping!!!
If you were to ask me what I think about when I run, most times I would have to answer «I don't know.» When I run it almost seems like time passes through me while I'm in a far away place...and when I finish I sort of land back in reality feeling refreshed and ready to take on the day.
Today as I looked around the gym at all the people running, biking, rowing or skywalking, I wondered how much energy we could all produce.
If we could use this energy maybe in the future we can get the kids [and parents] to run around the house to get enough energy to power the TV to watch their favourite show. The family would be healthier and more active, the electricity bill would be lower and above all a lot of people would stop watching so much Tv!!!
Freaky thoughts I know, but an hour and 2 minutes later my tempo run was over and now I realize that I am a pessimist when I wake up and an optimist after my morning run....When the alarm goes off I see difficulty in very opportunity to run before work and after the run I realize that each difficult run is an opportunity to get better at it.....
And speaking about running.....I'm running late to head home for a well deserved weekend and of course last minute Xmas shopping!!!
quarta-feira, 16 de dezembro de 2009
RUNNING GEAR

For those of you living in Portgual I think you'll agree that today is bloody cold. And adding to that it's wet too!!! So it was hard to believe my eyes when this morning I picked Levi up for our early run and and while I was still trying desperately to warm my hands he shows up in shorts....I guess it's all about mind over matter, if you don't mind the matter gets cold that's all.
We were on the treadmill [with Levi being Ipodless] and chatting now and then when one of the instructors said hi, we smiled and hied her back...Levi's wise comment as he looked around «it's 7 am and we have to smile at all the people who are working out!»
Today was just one of those days when getting out of bed just felt terribly wrong. Then you walk into the gym and see so many usual friendly faces and instinctively smile. The truth is the smile is a half hearted one. Half of you really doesn't want to smile and the other half is smiling at all the nutters [of which you are one!]....So today's thought is the gym is a MADHOUSE where nutters get given workout plans and machines of all sorts instead of medication.
segunda-feira, 14 de dezembro de 2009
Ethan got his helmet

Ethan continues to recover very well from his surgery and has been fitted with a helmet that he will need to wear 23 hours a day for the next 6 months to ensure the head grows appropriately....amazingly the foam on the inside allows for moulding in order to get the head growing in a certain way.
Apparently he hasn't made much of a fuss about having that huge thing on...I bet it probably feels warm in the Boston winter [Ethan has always loved feeling nice and warm]...
He looks so cute in his snake skin helmet!!!
Last Nights' Long Run in Lisbon

On the map below you can see the first few minutes before the Garmin batteries were dead....13kms total. We started off at Levi's house and went down Av. da Liberdade towards praça do comércio - fantastic view of the Christmas lights, people shopping and staring at us as wwe went by thinking we must be crazy. Some of them propbably even held their bags a little closer because Levi was running with a black cap on his head and looked like a fast running pick pocket [I wish I had a camera with me].
We then took the road towards Cais do Sodré where we turned in towards the waterfront. It is quite amazing at night with all the city lights, and they have made a real good job with the bike track that runs along the waterfront all the way...until Alcântara which is where we turned back because we hit the 7km mark and had the long way up on our minds....
Even though it was quite a chilly evening the run felt great until we began heading back towards praça do comércio, the wind was blowing head on and so we picked up the pace a little...

We then began the climb....meanwhile the shops had closed in Rua Augusta and there were less people walking the streets. We managed to set a steady pace, occasionally reducing speed so that we didn't have to come to a stop at any lights [our legs might decide not to carry on if we did]and before we knew it the first climb was over and we were recovering our breath on the downhill before the final challenge to Levi's door.
The run was great and I think we are both glad that we made it out the door. I actually woke Levi up from his afternoon slumber [I had just woken up from a very repairing nap myself] and had to call him twice before he decided to head out....
Levi's 2 Alcântara and Back
Map your trip with EveryTrail
quarta-feira, 9 de dezembro de 2009
Thesis break
It's been a while since I last posted but I have been busy preparing for the oral presentation of my thesis - which happened today and went quite well, and so haven't had much time....I did however keep up with the running and am quite sure that yesterday's late afternoon run was a major part in today's success.
Ethan has been recovering very well and we are still waiting for a picture of his fabulous smile!!!
Ethan has been recovering very well and we are still waiting for a picture of his fabulous smile!!!
quinta-feira, 3 de dezembro de 2009
TEMPO RUN

Tempo run for those who aren't all that familiar with runner's jargon could probably mean a few things (i) time to run (ii) timed run (ii) if you've got time run (iv) run to the beat....
The definition from runnersworld really made a lot of sense: «Most runners have trained their cardiovascular system to deliver oxygen to the muscles," says exercise scientist Bill Pierce, chair of the health and exercise science department at Furman University in South Carolina, "but they haven't trained their bodies to use that oxygen once it arrives. Tempo runs do just that by teaching the body to use oxygen for metabolism more efficiently."
That surely explains why I had a hard time keeping catching my breath....after so many years [not going to say how many!] of breathing I thought I would be more efficient at it by now.....
The «time to run» definition and the «timed run» weren't too far off though....it's was only the getting up part that was really hard because once I was running I was quite glad it was a timed run!
quarta-feira, 2 de dezembro de 2009
Thank you for all the support
Hi All,
Just wanted to send everyone loving thanks for all your support and prayers for Ethan through out the difficult period of surgery. It's a privilege to have such a committed network of friends and family that have really helped us through every day challenges.
Now that Ethan is at Home, Brittany and I are hoping for a speedy recovery and we will make sure we keep everyone posted.
Warm thanks for all once again,
Uris and Brittany.
ETHAN IS HOME
segunda-feira, 30 de novembro de 2009
ETHAN UPDATE

Ethan doing quite well....yesterday he felt better and actually played with his toys.
The weekend was a little rough.....on Saturday he had a difficult day - his CO2 level became a little elevated and his heart rate was a little slow, so was transfered back to the ICU for monitoring.
They did all the tests to make sure he was alright - which he was - and by the end of the day he was doing a lot better. He managed to get a good long sleep and that seemed to help.
Thanks everyone for your thoughts and prayers!!!
sexta-feira, 27 de novembro de 2009
IPODS CAN HEAR

I have owned an ipod for a very long time now and only 2 days ago did I realize that they have an undiscovered function: they can hear!
This is how I came upont this discovery: After a run one morning my ipod decided it would stop working. Blank screen, no button I pushed got the darn thing to light up [and yes I tried plugging it into my computer for power and even to the adaptor just in case it needed extra energy that the USB port couldn't supply].
I then passed it onto Fil who tried to work his magic with the thing...but he too had no success.
Of course I was shattered! After all it has been my running companion for such a long time and always keeps me awake in the subway in the early morning on the way to the gym before work.
Yesterday before I left the house for my run I saw it sitting there on the table and found myself saying: "Don't think that just because you quit on me I'm going to stop. I'll just trash you and get a new companion cause I got a lot of Ks to go before the Half Marathon!"
I picked it up and pressed a button and to may great joy it worked!!!!
ETHAN UPDATE

We got a call late last night from mama to say Ethan is doing very well.
Straight after surgery apparently he nursed....I can imagine that he must have been starved, and he's not fooled by that IV liquid they say is food....Mama's milk will definitely help him recover and get stronger faster!
Today they are hoping that he leaves the ICU and in the next couple of days he should get to go home. HORRAY!
quinta-feira, 26 de novembro de 2009
THANKSGIVING + UNCLE LEVI'S BDAY

In Portugal we don't celebrate thanksgiving, I guess for us Christmas is the time when you give thanks....
Each year I have had the fortune of being thankful for so much, despite all the twists and turns the years have brought [and there have been a few more than I would have hoped for!] and this year is no exception.
Today I can say that I am thankful for my great family [and that includes the extended family, you know who you are!].
We have what I call our «power house» where e know we are safe and where, no matter what circumstances, there is a helping hand to help us overcome everything. This year we have a new member in the family, little Ethan, and so our «power house» has become stronger, in ways that I am learning about every single day.
Little Ethan has also just undergone a major head surgery, at 2 months, and according to dada is recovering well, so thanks to all of those at Boston Children's Hospital, and way to go little E.
It's also uncle Levi's birthday [HAPPY HAPPY BIRTHDAY!!!]. Levi is definitely getting older but he's running like he's 20 and to make sure he stays that way started the day with an 8km tempo run [I was there, I saw it!!!!]
So I've got to run....don't want to be late for dinner.

Lets hope he doesn't eat the cake like this cause I want a piece too!!!!
A Special Present!
Wraped up in tubes and bandages, I received today a fabulous gift from my nephew Ethan...
The surgery went well and recovery is under way!
quarta-feira, 25 de novembro de 2009
A LITTLE EXTRA LIGHT ON THIS BIG DAY

It's surgery time today for little Ethan....and before waking up time in Boston today I started out with a prayer - that all goes well and that Ethan has a speedy recovery and soon gets to go home and enjoy his brother's hugs, kisses and giggles....
A few moments ago we got the information that the anesthesia had gone well and that they had begun the surgery....it's meant to last anywhere between 6 to 8 hours, so keep your thoughts and prayers flowing his way.
segunda-feira, 23 de novembro de 2009
ETHAN'S PRE-OP [Dada Update]
Last week Ethan meet with Dr. Merek and Dr. Waters who are both orthopedic specialists at Children’s for the feet and hands respectively.
With regards to the feet, no new news which is good since it validates everything we’ve heard form Dr. Upton – his feet should be fine and there doesn’t seem to be the need to do anything. He’ll be able to run, walk, etc. and how well will all depend on his mental development. He repeated what Dr. Upton said regarding the fee in that he’ll fit into normal shoes and will probably have one or two calices under his feet from the unusual bone growth there.
Dr. Waters was exactly of the same opinion as Dr. Upton and obviously knew him well saying Upton had worked on many Apert’s cases.
We are keeping Dr. Waters on our list of doctors as we have yet to figure out if we can financially cover Dr. Upton since he does not carry our insurance. We should be ok but it’s always good to have a plan B. I’m also thinking of keeping the foot orthopedist on the list, more because he’s an orthopedist than anything else.
PRE-OP CONSULT
There really weren't any tests done so everything went “clinically” well. However, they needed to draw blood to test before the surgery and poked Ethan several times with no success. That means we’ll need to go back to try and draw blood in a quantity they can use. HEY YOU...STOP POKING MY NEPHEW....IF YOU'RE GONNA DO IT JUST GET THE DARN BLOOD AND LEAVE HIM ALONE!!!! - Hoping that will do the job.
With regards to the feet, no new news which is good since it validates everything we’ve heard form Dr. Upton – his feet should be fine and there doesn’t seem to be the need to do anything. He’ll be able to run, walk, etc. and how well will all depend on his mental development. He repeated what Dr. Upton said regarding the fee in that he’ll fit into normal shoes and will probably have one or two calices under his feet from the unusual bone growth there.
Dr. Waters was exactly of the same opinion as Dr. Upton and obviously knew him well saying Upton had worked on many Apert’s cases.
We are keeping Dr. Waters on our list of doctors as we have yet to figure out if we can financially cover Dr. Upton since he does not carry our insurance. We should be ok but it’s always good to have a plan B. I’m also thinking of keeping the foot orthopedist on the list, more because he’s an orthopedist than anything else.
PRE-OP CONSULT
There really weren't any tests done so everything went “clinically” well. However, they needed to draw blood to test before the surgery and poked Ethan several times with no success. That means we’ll need to go back to try and draw blood in a quantity they can use. HEY YOU...STOP POKING MY NEPHEW....IF YOU'RE GONNA DO IT JUST GET THE DARN BLOOD AND LEAVE HIM ALONE!!!! - Hoping that will do the job.
FLULESS
segunda-feira, 16 de novembro de 2009
NEWS FROM ETHAN - [By Dada]
Ethan has been developing well the last couple of weeks and has grown to the weight of over 5 kg. Having in mind that he was 3.6 kg one week after being born, that’s pretty impressive weight gain and obviously a good sign, especially given the fact that he has upcoming surgery on the 25th. I don’t think there is anything we can do to prepare emotionally for this so it’s something we keep in the back of the mind that we just have to tough out.
Meanwhile, we’ve had a couple of additional doctor visits. First, I think you already know, was the overnight oximetry test that revealed Ethan was getting enough oxygen, so he has been off the o2 for a while now which is great (what a bloody nuisance that thing was – you try holding nose tube in place). Then we followed up with a visit to Dr. Upton who is a plastic surgeon specializing in hand and feet reconstruction. I have to say that both Brittany and I really liked this guy. He’s been one of the first doctor’s to see Ethan as a person and a human being while at the same time being clinically pragmatic. We went to his office in Chestnut Hill and saw all the hands and feet he worked on (he makes molds of his work) - he had a room (kind of like a trophy room) filled from bottom to top of the work he had done and it was pretty amazing. His experience with Apert’s is vast (he’s done tons of Aperts hands). The thing that stands out about him is that he remembers everyone he has done surgery on – by name. He kept picking up molds and saying, well this is so and so, and I have’t seen him in a while but his mom was bla bla bla... The only problem was tat he did not carry our health insurance plan but he also assured us that money was not going to stand in the way either – he would do the surgery for free if need be. Pretty nice guy if you ask me :)
On another note, with the exception of Ethan, my Mom and Brittany, all the boys have had a bought with the flu/cold. I kicked us all off, closely followed by Callen then Liam. In the kids schools, at one point Callen had 10 kids left in his class so it’s really going around. They are no longer testing for H1N1 and the general assumption is that if you have the flu, you probably have H1N1 and should treat it accordingly. Meanwhile, we’re still waiting on the swine flu vaccine that is nowhere to be found. The good news is we are now emerging from the flu/cold bought, with some very minor lingering coughs but with no more fevers, headaches and constant coughing. Ethan has been breastfeeding like a champ and as you know, that means he gets all the good stuff in mother’s milk has to help fight off viruses and such. Of late he does seem to have stuffy nose which obviously makes his breathing harder, specially since his airways are also congenitally narrower.
We also had a visit from the early intervention nurses that are real stars and whose goals are to help Ethan achieve his developmental and social milestones. Right now it’s a little to early to tell where Ethan is but the expectation and norm for Apert’s is for developmental milestones to be reached later than usual. However, recently Ethan has been rolling himself over and making plenty of eye contact and typical cooing sounds (sounds like vowels) which is good. The kid still loves to stare at wall shadows and out window (I’d say he has a fascination), and thanks for Pepa (my sister), he has had the company of his two little friends he loves – they are called spot and dot (on account of the fact that one that has a bumpy nose, spot, and the one that has a flat nose, dot).
Meanwhile, we’ve had a couple of additional doctor visits. First, I think you already know, was the overnight oximetry test that revealed Ethan was getting enough oxygen, so he has been off the o2 for a while now which is great (what a bloody nuisance that thing was – you try holding nose tube in place). Then we followed up with a visit to Dr. Upton who is a plastic surgeon specializing in hand and feet reconstruction. I have to say that both Brittany and I really liked this guy. He’s been one of the first doctor’s to see Ethan as a person and a human being while at the same time being clinically pragmatic. We went to his office in Chestnut Hill and saw all the hands and feet he worked on (he makes molds of his work) - he had a room (kind of like a trophy room) filled from bottom to top of the work he had done and it was pretty amazing. His experience with Apert’s is vast (he’s done tons of Aperts hands). The thing that stands out about him is that he remembers everyone he has done surgery on – by name. He kept picking up molds and saying, well this is so and so, and I have’t seen him in a while but his mom was bla bla bla... The only problem was tat he did not carry our health insurance plan but he also assured us that money was not going to stand in the way either – he would do the surgery for free if need be. Pretty nice guy if you ask me :)
On another note, with the exception of Ethan, my Mom and Brittany, all the boys have had a bought with the flu/cold. I kicked us all off, closely followed by Callen then Liam. In the kids schools, at one point Callen had 10 kids left in his class so it’s really going around. They are no longer testing for H1N1 and the general assumption is that if you have the flu, you probably have H1N1 and should treat it accordingly. Meanwhile, we’re still waiting on the swine flu vaccine that is nowhere to be found. The good news is we are now emerging from the flu/cold bought, with some very minor lingering coughs but with no more fevers, headaches and constant coughing. Ethan has been breastfeeding like a champ and as you know, that means he gets all the good stuff in mother’s milk has to help fight off viruses and such. Of late he does seem to have stuffy nose which obviously makes his breathing harder, specially since his airways are also congenitally narrower.
We also had a visit from the early intervention nurses that are real stars and whose goals are to help Ethan achieve his developmental and social milestones. Right now it’s a little to early to tell where Ethan is but the expectation and norm for Apert’s is for developmental milestones to be reached later than usual. However, recently Ethan has been rolling himself over and making plenty of eye contact and typical cooing sounds (sounds like vowels) which is good. The kid still loves to stare at wall shadows and out window (I’d say he has a fascination), and thanks for Pepa (my sister), he has had the company of his two little friends he loves – they are called spot and dot (on account of the fact that one that has a bumpy nose, spot, and the one that has a flat nose, dot).
sábado, 14 de novembro de 2009
quinta-feira, 12 de novembro de 2009
RUNNERS WORLD DAILY QUOTE
Believe that you can run farther or faster. Believe that you're young enough, old enough, strong enough, and so on to accomplish everything you want to do. Don't let worn out beliefs stop you from moving beyond yourself.
John Bingham, "Tools and Rules," Runner's World
John Bingham, "Tools and Rules," Runner's World
FLEXIBILITY -PART 1
Today I pulled myself out of bed and hit the gym.....the program said 8kms interval training but the truth is my body just wouldn't give.....so instead I did tommorrows 3 km easy run and gave myself a break!
Today's lesson for me is: flexibility is key!
We make all these plans and set all these objectives but sometimes life get in the way and we've got to get around the unexpected things that pop up....adapt and keep pushing on in the right direction.
But I wonder why being flexible about certain things seems so easy and about others is so much harder...maybe it's all about the uncertainty of the direction and not about the flexibility.
When things beyond our control happen, sometimes we freak out because in our minds they seem make the path ahead unclear, either because we no longer know wether it is the best path to take, or because we are afraid of going down the path only to see that it's really a dead end, or just because some days thinking ahead just seems like to much work.
Can't finish this thought right now....got to get to a meeting....will be back soon
Today's lesson for me is: flexibility is key!
We make all these plans and set all these objectives but sometimes life get in the way and we've got to get around the unexpected things that pop up....adapt and keep pushing on in the right direction.
But I wonder why being flexible about certain things seems so easy and about others is so much harder...maybe it's all about the uncertainty of the direction and not about the flexibility.
When things beyond our control happen, sometimes we freak out because in our minds they seem make the path ahead unclear, either because we no longer know wether it is the best path to take, or because we are afraid of going down the path only to see that it's really a dead end, or just because some days thinking ahead just seems like to much work.
Can't finish this thought right now....got to get to a meeting....will be back soon
[ETHAN CHALLENGE]
Hi There,
I think that I've finally come to grips with publishing out to the blog...
As you yourself have said seeing is believing. In the meantime and until we start using our eyes while we run a quick note to say that I hope grandmas recovery will be as fast as our progress!
Levi
terça-feira, 10 de novembro de 2009
STILL LEARNING...
Peps,
I still have to learn how to post on the blog...
Although you tried last night to deceive me with erroneous information about todays training session, i would like you to know that it was entirely unsuccessful. The attempt to open a gap of miles covered between us failed for i too have miled for Ethan and am up to the challange!!!!
Levi
PS: See you tomorrow on the mat! or maybe not if you decided to quit?? :)
I still have to learn how to post on the blog...
Although you tried last night to deceive me with erroneous information about todays training session, i would like you to know that it was entirely unsuccessful. The attempt to open a gap of miles covered between us failed for i too have miled for Ethan and am up to the challange!!!!
Levi
PS: See you tomorrow on the mat! or maybe not if you decided to quit?? :)
WEEK 2 BEGINS...
Is Done!
The great thing about our training program is that it has Monday as a rest day, just imagine if the long runs were on Mondays after work...I was hoping that the fact that they call it an EASY RUN would make waking up and heading out the door easier but I must say that today I almost stayed in bed after the alarm clock went off. But I have places to be this afternoon so I really had to tell my brain to open my eyes and get my body out of bed....1 late night and all I can think of is SLEEP! The thirties really hits you hard!
I wonder if Levi made it or if he just slept in today....
I am hoping to get an update on Ethan boy....he's got a lot of people meeting with him today and a Doc appointment in Boston....and all that has to fit around feeding times and diaper changes.....Ethan's dad has promised to send some recent pictures of Ethan - I hear he just put on an amazing smile :)!!!
I know Ehtan's brothers and dada have been a little ill this past week with a cold I think [maybe a flu?, never can quite tell the difference...].Wishing them all a speedy recovery and that Ethan boy and mama hold strong!
The great thing about our training program is that it has Monday as a rest day, just imagine if the long runs were on Mondays after work...I was hoping that the fact that they call it an EASY RUN would make waking up and heading out the door easier but I must say that today I almost stayed in bed after the alarm clock went off. But I have places to be this afternoon so I really had to tell my brain to open my eyes and get my body out of bed....1 late night and all I can think of is SLEEP! The thirties really hits you hard!
I wonder if Levi made it or if he just slept in today....
I am hoping to get an update on Ethan boy....he's got a lot of people meeting with him today and a Doc appointment in Boston....and all that has to fit around feeding times and diaper changes.....Ethan's dad has promised to send some recent pictures of Ethan - I hear he just put on an amazing smile :)!!!
I know Ehtan's brothers and dada have been a little ill this past week with a cold I think [maybe a flu?, never can quite tell the difference...].Wishing them all a speedy recovery and that Ethan boy and mama hold strong!
sexta-feira, 6 de novembro de 2009
THE TRAINING PROGRAM
The first thing we decided to come up with was a training program to help us complete the 21kms....We got the program through runnersworld....
Training started this Tuesday and I am pleased to say that both Levi and I have kept to the plan....Sunday's are our long run days so the week is still not over!
Here is the overview of our training. We will post details on how our training is coming along...
Training started this Tuesday and I am pleased to say that both Levi and I have kept to the plan....Sunday's are our long run days so the week is still not over!
Here is the overview of our training. We will post details on how our training is coming along...
QUALIFICATION
To qualify for the Ethan Challenge Levi and I had to successfully complete the «10km Corrida do Tejo 2009». It is half the distance we will be running and turned to be quite a challenge....
The race starts out in Algés and finishes in Santo Amaro de Oeiras and looks like this:

After the first tough uphill through Alto da Boa Viagem, finally a recovery downhill only to get to what would be my downfall....at the water stop and after grabbing a drink on the go I did not manage to avoid the bottle the guy in front of me tossed out and for a few minutes thought I would have to hop to the finish line, since I was determined to qualify no matter what.
All was ok and slowly I got back, by this time I had lost sight of Levi and decided that I had to push on ahead....making it in under 60 minutes wasn't going to happen but I no longer had that in mind....
Ât the finishing line I managed to caputre the thoughts that were going through our minds and decided to share them with you
The race starts out in Algés and finishes in Santo Amaro de Oeiras and looks like this:
After the first tough uphill through Alto da Boa Viagem, finally a recovery downhill only to get to what would be my downfall....at the water stop and after grabbing a drink on the go I did not manage to avoid the bottle the guy in front of me tossed out and for a few minutes thought I would have to hop to the finish line, since I was determined to qualify no matter what.
All was ok and slowly I got back, by this time I had lost sight of Levi and decided that I had to push on ahead....making it in under 60 minutes wasn't going to happen but I no longer had that in mind....
Ât the finishing line I managed to caputre the thoughts that were going through our minds and decided to share them with you
INTRODUCTION
Dear Family and Friends,
As a lot of you already know, on the 10th of September of 2009 our nephew Ethan was born in Boston, and within minutes of his birth he was diagnosed Apert's Syndrome.
Apert syndrome is a rare genetic mutation in approx. 1 in 200,000 births that when it occurs causes the fusion of the hands and feet as well as premature fusion of the sutures in the skull. Ethan will face considerable challenges as he grows to minimize the effects of this condition.
So far Ethan has impressed all of us and doctors as positive about his development. His first major challenge will be to undergo surgery at two and half months to release the prematurely fused sutures of the skull ensuring the brain grows and develops naturally. This will take place in Boston's Children's Hospital.
The journey ahead will be long and challenging and although we cannot take his place and alleviate all that he will go through we are committed to giving Ethan the best shot of having the care and opportunity he needs to lead a normal life. We are also committed to raising awareness of Aperts Syndrome and making an effort towards funding research into it's treatment.
As part of this commitment Levi and myself have decided to Run the Lisbon Half Marathon being held on the 21st of March 2010 to raise funds, which we have never done before, so we will really need help. You can help by making any contribution, no donation is too small:
Some giving ideas that might interest you:
(i) An amount for completing the Half Marathon
(ii) An amount per Km logged - in training or in the race
(iii) 10,09€ -because Ethan was born on 10/09
(iv) 6€ - Ethan's PICU was n.º 6
(vi) 6,11€ Ethan's age in months and days on the 21st of September
Close friends have said «you must be crazy!» and remembering school days when I actually got a detention for hiding behind a tree during cross-country with a group of fellow runnerfobics....I have to agree that it's going to be a big challenge! We will not beat any of the Kenyans this year, but we will be winners with Ethan in this challenge.
It is super easy to sponsor us: just send me an email and I will send you the details
Here you can also catch up on the latest news on Ethan, and keep an eye on how our training is coming along. Comments and feedback will be much appreciated
We'd also love to have any supporters there on the big day, so please don't hesitate to postition yourselves along the route!! [Levi isn't quite sure about that!]
Once again thank you for your support. .
As a lot of you already know, on the 10th of September of 2009 our nephew Ethan was born in Boston, and within minutes of his birth he was diagnosed Apert's Syndrome.
Apert syndrome is a rare genetic mutation in approx. 1 in 200,000 births that when it occurs causes the fusion of the hands and feet as well as premature fusion of the sutures in the skull. Ethan will face considerable challenges as he grows to minimize the effects of this condition.
So far Ethan has impressed all of us and doctors as positive about his development. His first major challenge will be to undergo surgery at two and half months to release the prematurely fused sutures of the skull ensuring the brain grows and develops naturally. This will take place in Boston's Children's Hospital.
The journey ahead will be long and challenging and although we cannot take his place and alleviate all that he will go through we are committed to giving Ethan the best shot of having the care and opportunity he needs to lead a normal life. We are also committed to raising awareness of Aperts Syndrome and making an effort towards funding research into it's treatment.
As part of this commitment Levi and myself have decided to Run the Lisbon Half Marathon being held on the 21st of March 2010 to raise funds, which we have never done before, so we will really need help. You can help by making any contribution, no donation is too small:
Some giving ideas that might interest you:
(i) An amount for completing the Half Marathon
(ii) An amount per Km logged - in training or in the race
(iii) 10,09€ -because Ethan was born on 10/09
(iv) 6€ - Ethan's PICU was n.º 6
(vi) 6,11€ Ethan's age in months and days on the 21st of September
Close friends have said «you must be crazy!» and remembering school days when I actually got a detention for hiding behind a tree during cross-country with a group of fellow runnerfobics....I have to agree that it's going to be a big challenge! We will not beat any of the Kenyans this year, but we will be winners with Ethan in this challenge.
It is super easy to sponsor us: just send me an email and I will send you the details
Here you can also catch up on the latest news on Ethan, and keep an eye on how our training is coming along. Comments and feedback will be much appreciated
We'd also love to have any supporters there on the big day, so please don't hesitate to postition yourselves along the route!! [Levi isn't quite sure about that!]
Once again thank you for your support. .
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