Sunday, March 17, 2013

Energy for Life Walkathon-April 20th, 2013

After we found out that Jagger has a Mitochondrial disease, we were able to find a lot of good info from the United Mitochondrial Disease Foundation (UMDF).
Of course, since I can't stay still, I decide to get involve with the UMDF. I first attended the symposium in DC last June and it was such a great event, along with 3 other Mito parents, we organized a small symposium synopsis in Atlanta upon our return to be able to share the info that was presented in DC with all the Mito families that could not make it to DC.
Another event I am currently involve with is the Energy For Life (EFL) Walkathon. I am in the organizing committee and I am the Co-Sponsorship lead.
This is the second year for the EFL walk in Atlanta but we did not participate last year as we were very new to the Mito world and not aware of the walk!
However, this year on top of helping to organize the entire walk, we also created a team to support Jagger and join the walk. We decided to keep the same theme as our website: "Moves Like Jagger". After all we will be walking/moving!
The walk is on April 20th, 2013 at Centennial Park in downtown Atlanta. It is right between CNN Center, the World of Coke and the GA Aquarium, so there is plenty to do after the walk if you have never been to Atlanta.
The registration opens at 8 am and the walk starts at 10 am. It is 1 mile thru the Park with beautiful landscaping and great skyline views of the ATL.

We would love for everyone to come walk with us, but we know it is not possible, however you can register as a Virtual walker on our team, even if you cannot be present.
The goal of the EFL is two folds, 1) raise funds to find a cure and 2) promote awareness of Mitochondrial diseases.
So if you are in a position where you can make a donation as big or small as you want/can, that is great, but if you can't please just spread the word about the EFL walk and Mitochondrial disease and feel free to leave us a comment on our EFL page.
Here is the link for our team, we hope a lot of you will join Moves Like Jagger!

EFL Atlanta, Moves Like Jagger

See you on April 20th!

Friday, March 15, 2013


Aside from bathing and changing another challenge regarding personal hygiene is cutting Jagger's hair. He doesn't have head control and constantly moves. We cannot (and don't want to) take him somewhere to get his hair cut so this is another skill I have to learn. I don't know anything about cutting hair but decided to at least buy a real hair cutting scissor. Not sure it really makes a difference because according to Sebastien I butcher his hair every time. Oh well I never claimed to be a hairstylist and the good thing about hair: it grows back!!

Let's just say my latest attempt was pretty unsuccessful. I used his wheelchair to prop him up but by doing so I was only able to cut about 1/3 of his hair. He now had a mullet as I can't reach the back and the front is a bit crooked as he kept turning his head.

Considering the difficulty we are having cutting his hair I can't imagine what we would do regarding his teeth. I hope he never has to go to a dentist because they would have to sedate him for sure and we cannot do that.