Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Friday, August 14, 2009

Packing

We arrived in Black Diamond just outside of Calgary late this afternoon. The girls are great travellers but the DVD player really does help!! Thanks Kelly. Barbie and the Diamond Castle and 12 Dancing Princesses have never been such a relief. We have spent the evening catching up with Mike's family, Trish, Bob and Joan. Tomorrow we're off to stay with Bruce and Emma for a couple of days before heading up to the mountains.

Packing for this trip ended up being way too easy physically and way too hard mentally. The girls now being 5 and 3 don't require much beyond changes of clothes and a few toys. Last summer when I was thinking about doing this trip I was imagining all of the gear that would be required. That is one of the reasons that we ended up buying the van. Now the van is kind of like a thorn in my side. It really isn't needed and stands as a reminder to what we don't have.

My youngest child now resides in a place that doesn't require strollers, car seats, and diapers. She no longer needs bottles, formula and a playpen. We didn't have to do any extra stops to "feed the baby" or "change a diaper". Instead our 13 hour ride was quiet for the most part besides the "How much longer?" I'd love to say that it felt great but it didn't. The tears fell as we left the city. Our family trip is definitely missing someone.

Missing you Georgie,

Love to you all,

Kristen

Wednesday, August 12, 2009

The Norwex Party

Thank you to all that came out to the Norwex party last night. At last count my mom's commission was over $300.00 which will all be donated to FSMAC. The orders are still rolling in however so if you wish to place and order please contact her. She is donating all of her commission until the end of summer. Because I hosted the party I also got quite a bit of free stuff and most of it will be thrown into the prizes for the raffles at Georgia's Journey of Hope.

On to other news. My friend Tanya Lynn is hosting a Trash the Dress event. Tanya is a very talented photographer, the same one that I mentioned in my last post. She and a friend are arranging the event. Anyone interested would meet to get their hair and make up done and then put on their old wedding dresses. The photographers will be snapping pictures in The Exchange District as well as Bird's Hill on the beach. If I can find my gown and fit into it Tanya count me in! Tanya and her friend Carrie are donating all of the proceeds to FSMAC in Georgia's name. Come on! Doesn't this sound like fun? Please visit http://tanyalynnphotography.blogspot.com for more information.

We're off to Calgary in the morning but I will continue posting and checking emails. Before leaving I wanted to share some pics of the girls having fun over the last couple of weeks.


Love to you all,

Kristen

Tuesday, August 11, 2009

Why?

Well, the sun has finally decided to shine down. Yay!! The girls and I were out at the local wading pool this afternoon and were swimming at a friends' pool yesterday. We have plans to be out swimming yet again tomorrow before packing up the big blue van and heading out to Calgary. We are looking forward to spending time with family and friends and spending some time as a family up in the mountains.

My quiet moments have been filled with thoughts of October 3rd. I just want to say thank you to all of you that have already contacted me asking how to help. Right now, the push is on for prizes. We have the letters finished and some of them have now been sent out. If you would like a copy of the letter for your company please contact me and I will do my best to get it out to you as soon as possible. Thank you to Tanya. Tanya is a photographer and she has come up with a fabulous idea for a prize. Let's just say that it has something to do with lilies. September 3rd will be the date to assemble all of the volunteers. Please come prepared to sign up on a committee and to share any ideas that you may have.

With Bill and Victoria Strong's permission I have copied and pasted some of their last post to remind all of you why Georgia's Journey of Hope is important.

"The SMA program is currently at a critical and exciting juncture. All of the pre-clinical efficacy studies, including the pivotal animal safety studies, have been completed, demonstrating that the cells work and that the motor neuron replacement should be a safe strategy in the treatment of diseases, such as SMA, characterized by motor neuron loss. Dr. Keirstead and his team are now preparing for a pre-IND meeting with the FDA in Q3-2009 with a targeted Phase I clinical trial in humans to begin in early 2010. Phase I will initially focus on babies with SMA Type I, Gwendolyn's Type, with other Types planned for later phases of the study.

Families of SMA and others have invested over $1.5 Million in the program over the past 5 years. While California Stem Cell will be responsible for most of the funding through the clinical trial process, the program needs an additional ~$500,000 as a bridge to that phase for staffing and studies to support the requirements leading into that critical Phase I clinical trial in early 2010. This research is unbelievably promising and could truly change the future for SMA and countless other diseases.

If you or anyone you know is interested in helping see this promising research make it swiftly to and through clinical trial or if you know any foundations that focus on this type of groundbreaking medical research please contact," the Strongs http://www.gwendolynstrong.com/

Please note that we have stated that Georgia's Journey of Hope will be a fundraiser for FSMAC which means that it will more than likely stay in Canada but it doesn't matter where the cure is found. Let's just help them find it!! FSMAC uses 95% of it's donations towards research.

Love to you all,

Kristen