[For every $500 donated, we invent a new musical instrument]. Having said that, we’re only $150 off of starting the next one, so if anyone’s feeling generous… click here :)
Stringtotter:
Made by Nao Nakazawa, joined in performance by Sam Hernandez
Bartz Box:
Made by Charlie Gurke, performed by Claire Phillips
CHARCOT MARIE TOOTH
With the completion of the instruments, it is easy (and fun) to get caught up in the excitement of showing them off and exploring what they can do, hence the festivals and performances we're involved with. Thank you Jeana for writing the following post so we can keep the fundraising and awareness of CMT moving with the same enthusiasm as the instruments. (Tim)
Mom's Mission
post by Jeana Sweeney
As I tuck my two beautiful girls into bed, I give myself a little pat on the back and think, “Well I made it through another day.” Being a mom with a disability can sometimes be very challenging, so I feel much rewarded when the day ends, and I know that I gave my children everything I have.
I have been living with a disorder called Charcot Marie Tooth since the age 15. Charcot Marie Tooth Disorder, also known as CMT, is the most commonly inherited peripheral neuropathy. It affects 2.6 million people worldwide. Progression is slow, causing loss of normal function and/or sensation in the lower legs/feet and hands/arms. The symptoms and characteristics of CMT are tripping, ankle sprains and burning or pins and needles sensations in the feet or hands. They also include foot deformities such as high arches and hammertoes. CMT causes muscle wasting in the lower legs and feet and muscular atrophy in the hands, often causing people to have difficulty with tasks involving manual dexterity, such as writing and manipulating zippers and buttons.
As the alarm goes off at 7:00am, I lay in bed, and my legs are pounding in pain. I think, “Lie in bed or go in enjoy my day?” I always choose to go enjoy my day!! As soon as I hear “Mom are you up?” l put my pain aside, smile, and start my day. Sometimes it does get upsetting to me that I have a disability. The little things that people do everyday are sometimes frustrating to me, like opening a new box of cereal or cutting an apple. I have taught my “little ladies” to be very patient with me because it definitely takes me longer to button up their coats than it does for their daddy. My oldest knows that I cannot participate in a game of softball, but she knows that I will be the coach in a heartbeat. It’s not about not being able to do things, it just means I have to change the way I do them.
The day the doctor told me that my youngest daughter has CMT, I cried for days. There’s a tremendous amount of guilt that goes along with knowing you as a parent passed a disorder on to your child. Being that CMT is inherited, your children have a 50/50 chance of having it. After I wiped my tears away, I promised myself that I would try to be the best role model for her. My goal is to show her that she can live a fulfilling life even though she is living with CMT. I try to be one step ahead of her CMT progression by scheduling physical therapy sessions once a week. She also does therapeutic horseback riding once a week from spring to fall. As parents, I feel it is our job to educate ourselves and be the best advocate we can be for our child.I have been involved with the CMT Association (CMTA) for over eight years, I started by being the co-leader for the support group in Johnstown, PA, which holds over 100 individuals with CMT (one of the largest in the country). I slowing started doing fundraisers and raising awareness. With the news of my daughter and the CMTA starting the STAR Program (which is an aggressive research program), I become a vigilant advocate for raising awareness and funds for CMT.
I call this a MOM'S MISSION!!!
I have never been ashamed or embarrassed about having a disability and neither should anyone else living with one. I truly think that one of the most interesting things about me is my CMT, because when I am telling someone that I have CMT, I am teaching them at the same time.
