Rachel
Rachel 12.5 Video taken 10/22/12
Notice her speech and cognitive decline…. Just showing what Batten Disease is currently doing to Rachel.…
Horseback Riding
Another Batten mom named Cheri arranged for Rachel and the kids to go horseback riding at the Colorado Springs Therapeutic Riding Center at the Mark Reyner Stables. When we arrived they were waiting and I was a little hesitant at first because most people don’t get Rachel, especially people who don’t know her. About 5 minutes into our session with the ladies and Bubba the horse I realized I could take a deep breath because they are very experienced with helping special needs kids with riding. One lady (Corey) led Rachel and Bubba and Nancy and her daughter walked on either side of Rachel and helped her with balance. I was most impressed with their handicap accessibility and the ramp they had to help kids mount the horses.
It was a wonderful time for all of the kids and a memory I will treasure forever.
Here is a link to their website: http://markreynerstables.com/…
Rachel – Hottubin’
Due to the excessive heat in Colorado we have checked into a hotel for the remainder of our stay. Rachel had the pleasure of sitting in a hottub for a little while, something she really enjoys but doesn’t get to do too often.
Life is good!…
McCarthy Meet-up
We went out to lunch with dear friends at Poor Richards in downtown Colorado Springs. Vegan, gluten free or anything else you could possibly want. It was the best food I’ve had in a very long time!
Check out their website: http://www.poorrichardsdowntown.com/…
Team Rachel with another Batten Mom
Sadly, her son passed away last year but that doesn’t stop us Batten Families from sticking together. Thank you to Cheri who treated us to lunch this week! <3…
We have already raised over $400 towards our $7206 goal to fund research for Batten Disease. The kids are excited, Rachel keeps on trying to convince me that flying would be so much easier (no shit, love) but that wouldn’t draw attention to her, to the disease, to the lack of treatments. The minivan we just bought is being lettered tomorrow with Team Rachel’s info all over it to draw attention to us. I personally hate attention, the attention of this disease, the admiration of doing a good job with Rachel and fundraising (etc), but I’ll grin and bear it every last step of the way for this kid, for all of these kids. Can’t wait to hit the road with our business cards, bracelets, pamphlets and our brightly lettered van to get more money into the hands of the people who are tirelessly researching to cure Batten Disease and several other genetic diseases just like it. If we can figure out one, it will give us answers to others. I won’t quit this fight until the day my heart stops beating. Please donate if you can and spread the word if you are able.
Love,
Kat (Rachel’s Mom)
Picture: Rachel and Julie at the end of walking in Hull’s Memorial Day Parade.…
Today is a great day!
Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol). I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her. Thank you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years. :)
I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months. I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks. I guess my Mom had mental telepathy and for that I am so grateful. We have one official walker!!!!
This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf. Plus the prizes and raffle items. I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday. They raised about $30,000!!!! My goal is to raise $10,000 this year for our walk/run/raffle.
Have a great day today if you read this entry!!!
Photo: Rachel (6), Kat (?) and Julie (2.5). Not really easily seen is London who was 8 days past his due date and born the next day. We were at a pumpkin patch in Colorado.…
Grand Mal (Seizure #3)
At around 8am today Rachel had another seizure. She was taking her pills with John (had swallowed 2 of 3) and she went into a trance and started turning her head almost in rhythm with the gears of a clock’s “seconds” hand. Couldn’t get her to reply and we laid her on the couch on her side. Convulsions lasted for minutes and I administered the diastat rectally.
I’m sure some people read this blog and think that sucks and on some level think that this is normal and expected. Not a big deal. But this is my healthy kid and this is only the second seizure we’ve seen at home.
This is scary. It makes my stomach hurt. She might be terminally ill but she is healthy on the outside and seizures are harder for me to witness than the night I got her official diagnosis.
She is passed out on the couch missing a fun day of green. So unfair.…
