It has been some time since I have taken the time to written you, but as you already know it has been a crazy summer for our family, and now I feel worn out, but despite all the pain the Lord is seeing us through, where would we be without him?
As you know my sister, my twin sister, Naomi has been diagnosed with FA, and my heart is breaking because I know from experience just how hard it is to live with a neuromusclar disoder, but she will get through this I believe that.
Rebekka Rachel is a mixture of emotions right now, elated because the doctors here, are giving her hopes of walking again, with the help of prosthetic legs, and saddened over the frist between Susie and Johnny. She feels as if she is being pulled in two different directions, and Susie is doing the majority of the pulling.
Missy said she stopped by your house the other day, she is another miracle in our family. She is having a battle with being frustrated over not being able to speak, but if I know her she will not be silenced long. It brings tears to my eyes though, she spent the night at Naomi's the other night, and kept trying to say I do, but it just came out muddled, she was trying not to cry, but I could see the pain in her eyes. I told her it was okay to cry, and finally she let go of some of that pain, but she knows Gregg loves her, and he hurts for her, but what happened to her, the stroke has not changed his love for her.
I am amazed at how far Rebekka Rachel has come since she was shot, again I am glad that she is so strong and ressilent though.
My girls are doing well, but Daniel has been diagnosed with Duchenes and that scares me, I have seen what Johnny has been through and I hate to think of my little boy suffering like that. Please keep him in your prayers.
I am going to call it a night soon I think, I really should. I am going to Naomi's therapy session with her tomorrow and then taking her to lunch, I could tell when Missy took us shopping earlier, she was completely self conscious, I want her to see that there really is no reason to be, she did not ask for this, and no one has the right to judge her simply because she now has a Neuromuscular disorder. It is really hard for her though, so I think a long sister to sister talk is in the works, if you are able I would love to have you meet us for lunch too, if that is at all possible. Just call me and let me know when you can go and where you would like to go, I think you could offer Naomi a great deal of encouragment too.
Lousia May Mason
(What FA IS
The MDA association describes Fredericks Ataxia in this way.
Definition a neurological disorder that causes damage to the peripheral nerves, which carry signals from the brain and spinal cord to muscles, and relay sensations to the brain and spinal cord from the rest of the body; damage to the cerebellum, a part of the brain that helps coordinate movements; damage to the heart
Cause defects in the gene that carries instructions for frataxin, a protein found in cellular structures called mitochondria; the result is diminished energy production in cells, including those of the nervous system and heart
Onset typically between 10 and 15 years but has been diagnosed in people from ages 2 to 50
Symptoms ataxia loss of balance and coordination affecting legs and torso; possible difficulty with speech and swallowing; muscle spasms; loss of sensation; skeletal abnormalities; cardiac abnormalities; possible diabetes or glucose intolerance
Progression sequence and severity vary
Inheritance autosomal recessive inheritable through a faulty gene contributed by each parent.)