Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Friday, November 9, 2012

Quest for a Cure Update!

Many of you came out and walked with us at our 3rd Annual Quest for a Cure!  Thank you thank you so much to Annie's A-Team and to everyone who donated.  I'm thrilled to tell you that we raised over $32,000 for Rett Research!!!  That pushed us to over $100,000 total raised in the past 3 years!  
 I just want everyone to know how important this is.  Rett Syndrome is a rare disease and is fairly "new".  We get a very small amount of government funding and that is only for basic research, not the kind of cutting edge research we need to CURE diseases.

 Rett research has made amazing advances in the past few years - 1999 the discovery of the gene that causes Rett Syndrome (MECP2), 2007 the REVERSAL of symptoms in a rett mouse model, 2012 bone marrow transplant arrests sypmptoms of Rett Syndrome.  Researchers believe that Rett Syndrome IS cureable in our children, however, funding research is expensive.  The science is there but the funding is not.  Money is holding us back from finding our cure and that is not acceptable.

 We choose to fundraise for the Rett Syndrome Research Trust because they are fiscal very lean.  96% of your donation goes directly to research.  When you donate you are not paying someones salary or the light bill you are infact making an immediate difference in Annie's life and the lives of the girls pictured below.  For that we are truly greatfull!

HomeSchooling Update!

I know, I know, I never update anymore.  I'm so sorry! With school for the kids and work and Birthday's and our Quest for a Cure walk, and soccer and cub scouts and... well, you get the idea, it's been so crazy busy!!!  But, thankfully we are starting to slow down a bit and I really want to let everyone know how Annie is doing!
For starters let me just say that I can't even imagine having Annie back in school right now. She is doing AMAZING!  She's learning so much, she's thriving, she's growing, she's awesome!  I'm so blessed!  This summer we discovered that Annie could read!  Our goal for this year is to determine what reading level she is at, have her continue to practice reading and expand on it!  Literacy is our top concern and we are working on it with doing tons of reading, flash cards with site words and using our ipad apps with stories that highlight the words.  

Annie is also excelling in her math skills - we have a "shoot for the stars" math wall, Annie gets a star each time she shows us she is able to skip count.  So far we have a star up for counting by 1's and counting by 2's, she's been introduced to counting by 5's and 10's but we still have yet to "test" on that.  We've been working on odds and evens and lots of other things.  Science is Annie's favorite subject!  If she gets a choice that's what she will pick to work on.  We've done lots of reading on science and watched videos and even did an experiment about properties of matter, we're hoping to get in LOTS more experiments as the year goes on.  

We've never really used a full curriculum for Annie, we've just looked at the State standards for general education and tried to find materials that we were able to adapt that would help us teach these things.  I always felt as if Annie was understanding things but there were so many "holes" in what we were teaching.  There's a difference in knowing that 2+2=4 and understanding what 2+2=4 means.  We have recently found an amazing app and website that have a complete curriculum for grades K-3 and it is all adaptable AND it is in a format that Annie learns best - short educational videos from Brain Pop Jr.!  We LOVE this  and so does Annie!  In addition to the videos their website offers lesson plans, experiments, crafts, worksheets and quizzes!  We are LOVING this and can't say enough good things about it.  

So, home schooling ROCKS but there is no way I could do all of this on my own and stay sane.  Our wonderful Lauren is continuing to come and help out with Annie 2 days a week.  She typically takes Annie to therapy but we have once again been denied (insurance issues!) so Lauren is helping us out more and more with stretches and physical therapy at home as well as lots of schooling.  Lauren is amazing, she works with Annie with such patience, she understands her so well and believes in her abilities!  Annie LOVES Lauren, her face lights up when she sees her and is always leaning in for snuggles.  Their bond is beautiful.  In addition to being great with Annie Lauren allows me some free time to work in James and Gracie's classrooms, get housework done, get my RettGirl work done, grocery shop and if you can believe it I have actually gone out several times to meet friends for coffee - GASP!  I know!  It's been a LONG time since I have socialized, it's great!  

One last bonus to home schooling is that we get in a TON of PT during the day.  Annie is doing awesome after her therapy back in July!  She is walking and standing so much more!  We do some of her school work in her stander.  We've been doing lots of tummy time and we have been using our vibration platform - it has really increased Annie's balance and muscle tone.  

Of course not every day is spent being so productive.  We have lots of days where Annie may be able to do therapy but can't concentrate enough to do school, days where she can concentrate on school but is too weak to do therapy and days where she is exhausted and her body just needs to rest on the couch but one thing is certain, she is doing leaps and bounds better than she was a year and a half ago and I thank God everyday that I am able to stay home with her and home school her.  I'm learning so much about my little Annie and everyday it becomes more and more clear that she is my very intelligent, ambitious little girl that remains trapped in a body that has failed her.  We will continue to fight daily to educate her and keep her strong and healthy until God's perfect time when He reveals a cure.  

A friend posted this video about a man who had a stroke and was unable to talk.  When his family decided to try a drug he regained the ability to speak for an hour out of his day.  In this video he talks about what it's liked to be trapped, unable to communicate.  This is exactly what my sweet Annie is going through - daily torture, being at the mercy of others for every basic need, unable to have a choice or an opinion and having others believe that you are brain damaged and unable to understand anything. My heart breaks for my sweet Annie, I wish I could take her place.