CCK week-end (Spinal Muscular Atrophy Type 1)

Lizzy had a GREAT week-end with lots of her friends at Courageous Kids in Kentucky http://www.courageouskids.org/ . I believe they said 24 families were there. I know 21 SMA families and a few families with other diseases.
This is such a great place for kids with disabilities in a "Safe" atmosphere to act like kids. This was SMA Weekend.

Elizabeth was a little "social butterfly". She would run off in her power chair then come back to be suctioned a few times. She did awesome. She played with Emma. She got to see Ben (Counselor)that stole her heart last year. Amy (Counselor) helped Lizzy paint an airplane and many other things. Amy was great to Lizzy also. She has changed so much this year. To see her act like a regular kid took my breath away. I loved it. We got to see so many kids. We saw MJ, Annah, Nick, Emma, Emily, Jenna, Dani,Jacob,Erinne,Roman,Mary, Haley, Alex, William,Conner, Chase and many more kids. It was awesome to see these kids and their families.


Lizzy did so well. No extra coughs or any incidents at all. It was just wonderful. She a rode a horse, she made Yak, bowled, she painted an airplane, She helped Ben make her a bracelet(with Ben and Lizzy beads)and much more. She did the dance train and had a great time. She was in her power chair for hours.
The counselors are the greatest ever!! They just love the kids
This place is like a dream to us. I wish it was more than once a year.

Lizzy slept all the way home. She never naps usually

Lizzy is doing great these days. The power of prayer her meds,her diet and her daily routine has all added to her strength. She is unbelievable. All these kids are unbelievable.

To see all these kids we have known was great. We all are from all over.
Lizzy is so excited about the FSMA Conference in June. She can not wait to see some of these kids again.

Elizabeth's doctor from Madison lost her Mother last week please add her to your prayer list. DR.Schroth: We have you in our prayers. You are a big part of our lives and we hold you very close to our hearts.


We believe in miracles.
www.our-sma-angels.com/elizabeth

We are back from our great week-end at The Center for Courageous kids Camp. It was absolutely fantastic time. It was like we were all treated as royalty.
All the staff was so great to all of us. They showed so more interest,caring and compassion for all our kids. Lizzy had a super great time.
There were lodges for the families and they had rooms that slept 8 with your own bathroom that had 4 stalls (1 was handicapped accessible )
and TWO showers(1 handicapped accessible. They said they can house 32 families at a time.
They prepared 3 meals a day for us at NO charge. They had entertainment like Karaoke, Bowling, crafts, wood working, horse back riding, BINGO (with prizes) swimming there. It was like ( I heard a parent say) Make a Wish part 2. Its was amazing .
We had great time talking at visiting with the parents.
We got to see MJ, Chase, Jacob , Conner, Alex, Leah, Annah, Dani(for short time. She was not feeling well) and their families. It was a great time . We got meet a lot of new people too. Angel Kaydence's aunt was there too. Great talking to every-one.
Lizzy met Ben and he stole her heart. He was one of the camp's staff members. He even serenaded her with his guiter. She bonded with MJ as I knew she would. She always has loved MJ.
Quite a rememberable experience. If anyone gets a chance to go I really
suggest going!!
Now I have about 30 emails to get caught up on.