Hello Friends and Family,

It’s that time of year again. A time to celebrate those with Angelman Syndrome and help bring us one step closer to discovering a cure! Our family is heading to Salt Lake City again to participate in the Angelman Syndrome Foundation National Walk on May 17^th.  This is a great opportunity for us to celebrate Ridge and all of his remarkable accomplishments this past year. Each and every day Ridge continues to amaze us with the things he is learning.  From learning to sit-up, to crawling, to dancing in weddings in his walker Ridge continues to demonstrate there is no milestone that is outside his grasp.  In addition, he has developed a magnetic personality that makes us smile every day.

When looking at Ridge’s numerous achievements in such short amount of time, one can’t help but draw parallels to what has been accomplished in Angelman Syndrome research. This disorder has been named, the underlying genetic issue discovered, and remarkably it has been cured in a mouse model. The pace at which this set of events has occurred is a world record by medical research standards, but for progress to continue, additional funding must be raised.

This year we have decided to raise money for the Foundation for Angelman Syndrome Therapeutics (FAST).  We were fortunate to have been able to participate in the FAST Global Summit this past December and it was an outstanding event.  This foundation’s goal is 100% focused on funding research projects that may someday change our son’s life.

So, we are asking our friends and family to again please donate to the cause if your heart so moves you, read and learn about Angelman Syndrome, and then spread awareness, because awareness leads to funding, and funding to a cure.

 

Click HERE to support team Ridge! 

I made it......

I made it past the 1 year anniversary of Ridge being diagnosed with Angelman Syndrome. As I think back and remember that day, most of it being a blur, but I do remember the thoughts going through my mind.

I remember thinking......

how can this be happening to me
my life will never be what I dreamed it to be
how can I take care of an adult that is handicapped
there is a chance he will die
what will this do to Rory's life
how is Matt going to handle the news
what will happen to him after I die
where will I be when he has his first seizure

I wasn't sure what I was supposed to be feeling or thinking that day, but the perfect life I dreamed of was GONE.......

OR was it?

Over the past year I have been very lucky to get to go to Salt Lake for the National Angelman Walk, Chicago for the Annual FAST Gala and connect with people all over the world through FB. They have shown me that life is enjoyable when living with an angel. That life with an angel isn't all bad. People living with Angelman Syndrome are amazing and make the world a better place.  Ridge is showing that to me regularly these days. He has really started to bloom. His personality is coming out in full force and I am privileged to get to be his MOM! I can't wait to see what great things he is going to do in his life!

One year later these are some of the thoughts going through my mind.....

who else will this journey have me meet.
what will it be like when they find therapeutics to help these kiddos
what's the 1st vacation am I going to take Ridge on
what fundraisers can I do to spread awareness and raise money towards a cure
how many people are going to be touched by Ridge's amazing smile
Rory will have an amazing experience to teach her the importance of life
what is my next travel experience Angelman Syndrome is going to send me on

One year later I can finally say I am excited to see what direction my life is going to go. I am back in the game of life and being a mom. I am excited to start dreaming of the future again. Because the future looks BRIGHT!


Don't forget to wear blue on FEBRUARY 15th to celebrate INTERNATIONAL ANGELMAN DAY!

Please visit cureangelman.org to learn more about AS or give a donation!

Loving life!

So pretty!

On the move (slowly, but surely)

Great day with Rory!

                                                     Such a big boy sitting up drinking!

Hungry

Is it bed time yet?