Muscular Dystrophy Association Telethon Sept.1st: Imagine you or your child/ren having a rare disease that is debilitating and no one knowing what it is or how to treat it. That is every MDA family. Make sure give what you can. All donations go into so many things. Payroll for them, is at the bottom. You can look up the MDA.org and pull up the tax returns. It shows just how much they…
Happy Easter from Jaelynne, William and the rest of our clan. Have a wonderful day! Love and hugs!
Who else goes to the store without a care about your appearance? We don't. LOL! If we spent all of our time making sure we looked perfect…Read More
Did you know that a person with Charcot Marie Tooth disease is unable to give organs to save another person's life? I guess the fear is that we would transfer the CMT to the patient. Makes me sad. I think before they block people with a specific disorder, they should do some research as to whether…Read More
We found out recently that JAelynne may have another condition in addition to Charcot Marie Tooth. It is called Ehlrer Danlos Syndrome. This is because of her hypermobility. Her joints are very lax. Hypermobility is not unheard of with CMT, but the specialist seems to think there is more. In…Read More
REFLECTIONS OF A MOTHER
•I gave you life, but cannot live it for you.
•I can teach you things, but I cannot make you learn.
•I can give you directions, but I cannot be there to lead you.
•I can allow you freedom, but I cannot account for it.
•I can take you to church, but I cannot make you…Read More