I have so much to tell, mostly about life outside of music which is why I have been quiet here. I do use Facebook for all the day to day stuff and hope to connect with some of you there too. Life has been challenging me in so many ways over this past year. I have been forced to put music on the back burner as I am putting all my love energy towards my new roles as wife, step-mom and advocate for both my own health as well as my stepson George's battle against Duchenne Muscular Dystrophy.
Time that I wish could use being musically productive, I spend reading medical articles, researching and applying for clinical trials, making and attending doctor appointments both locally here in Ventura as well as south at UCLA. My husband John and I are doing our best to be engaged and involved in different advocacy groups like Parent Project Muscular Dystrophy and CureDuchenne where we connect with other families with Duchenne.
We have been grateful to have connected with some wonderful groups like Magic Wheelchair, a group of amazing folks that volunteer their talents to build the most amazing costumes for kids in wheelchairs! George received a build this Halloween of his Mad Max Hot Rod, which they built around his wheelchair that had just been replaced with his new one. The reveal took place at our house as part of our 17th Annual Pumpkin Carvin' Potluck. Good times! We are so grateful to everyone involved, especially Ryan Weimer, founder and MD parent who has the goal of doing a build for every child that wants a once in a lifetime costume!
We were also able to sent George to the Painted Turtle, where children with serious medical conditions celebrate just being kids! A weeklong sleepaway adventure camp where George was able to ride a horse, go on the zipline and just enjoy himself at a camp with a fully staffed medical team where everything was accessible. They even have a siblings week where Emily got to go for a week with other kids living with a seriously ill brother or sister.
George attended MDA Summer Camp again this year for his third time and had a blast, though it happened to fall back to back with Painted Turtle so was almost 2 weeks away from home. Might be a little much for next year, we'll see.
We also held a fundraiser called the Percy Project to raise money for a wheelchair van which we have been in desperate need of as George has grown and could no longer fit in safely. We are still upside down in our 2010 Dodge Caravan but we raised just enough to buy a 1994 Dodge Voyager with a ramp and lock down spot for his chair where he can ride shotgun. He loves it. We can still accept donations on our GoFundMe campaign if you'd like to help out.
We also purchased a 29' Reno Transit bus with kneeling capability and a ramp which we will be building out all wheelchair accessible for our family trips in the years to come. She's a beautiful diesel pusher and we look forward to making her a wheelchair friendly ship to sail all around this beautiful country, making stops at every National Park we can! Right now, we are trying to sell my beautiful bus Patience as I just cannot retrofit her to meet my needs anymore. I hope to find her new home soon as we are stretched to our limit financially these days.
My health is fairly stable but after my latest MRI, it is clear that my MS is progressing by the appearance of new lesions and my experience of some increasing difficulty in daily life. I am on a fairly new drug called Gilenya, which is an oral pill I take every other day. I don't really have any side effects from the med, so that's good. Hopefully it will suppress any full blown attacks which would further the progression down the road prematurely.
This week, we opened our own auto shop Highway 33 Garage, which will let John earn good money but still allow him to make all the appointments and give George the care he needs on account of his disability. We'll be having a grand opening on January 28th where I hope to play with some of my amaziing musical friends and celebrate this HUGE milestone and direction for us. There IS a light at the end of the tunnel!
I hope to load a bunch of pictures up of all that's happened this year and it's on my list of things to do for sure! It's a matter of being organized at this point and today, I focus of getting all my little gifts wrapped and ready for the shorties in my life this holiday.
Wishing all the best to you and yours in the year ahead, hope to be connected again soon!
Time that I wish could use being musically productive, I spend reading medical articles, researching and applying for clinical trials, making and attending doctor appointments both locally here in Ventura as well as south at UCLA. My husband John and I are doing our best to be engaged and involved in different advocacy groups like Parent Project Muscular Dystrophy and CureDuchenne where we connect with other families with Duchenne.
We have been grateful to have connected with some wonderful groups like Magic Wheelchair, a group of amazing folks that volunteer their talents to build the most amazing costumes for kids in wheelchairs! George received a build this Halloween of his Mad Max Hot Rod, which they built around his wheelchair that had just been replaced with his new one. The reveal took place at our house as part of our 17th Annual Pumpkin Carvin' Potluck. Good times! We are so grateful to everyone involved, especially Ryan Weimer, founder and MD parent who has the goal of doing a build for every child that wants a once in a lifetime costume!
We were also able to sent George to the Painted Turtle, where children with serious medical conditions celebrate just being kids! A weeklong sleepaway adventure camp where George was able to ride a horse, go on the zipline and just enjoy himself at a camp with a fully staffed medical team where everything was accessible. They even have a siblings week where Emily got to go for a week with other kids living with a seriously ill brother or sister.
George attended MDA Summer Camp again this year for his third time and had a blast, though it happened to fall back to back with Painted Turtle so was almost 2 weeks away from home. Might be a little much for next year, we'll see.
We also held a fundraiser called the Percy Project to raise money for a wheelchair van which we have been in desperate need of as George has grown and could no longer fit in safely. We are still upside down in our 2010 Dodge Caravan but we raised just enough to buy a 1994 Dodge Voyager with a ramp and lock down spot for his chair where he can ride shotgun. He loves it. We can still accept donations on our GoFundMe campaign if you'd like to help out.
We also purchased a 29' Reno Transit bus with kneeling capability and a ramp which we will be building out all wheelchair accessible for our family trips in the years to come. She's a beautiful diesel pusher and we look forward to making her a wheelchair friendly ship to sail all around this beautiful country, making stops at every National Park we can! Right now, we are trying to sell my beautiful bus Patience as I just cannot retrofit her to meet my needs anymore. I hope to find her new home soon as we are stretched to our limit financially these days.
My health is fairly stable but after my latest MRI, it is clear that my MS is progressing by the appearance of new lesions and my experience of some increasing difficulty in daily life. I am on a fairly new drug called Gilenya, which is an oral pill I take every other day. I don't really have any side effects from the med, so that's good. Hopefully it will suppress any full blown attacks which would further the progression down the road prematurely.
This week, we opened our own auto shop Highway 33 Garage, which will let John earn good money but still allow him to make all the appointments and give George the care he needs on account of his disability. We'll be having a grand opening on January 28th where I hope to play with some of my amaziing musical friends and celebrate this HUGE milestone and direction for us. There IS a light at the end of the tunnel!
I hope to load a bunch of pictures up of all that's happened this year and it's on my list of things to do for sure! It's a matter of being organized at this point and today, I focus of getting all my little gifts wrapped and ready for the shorties in my life this holiday.
Wishing all the best to you and yours in the year ahead, hope to be connected again soon!