Re: Anne R-Future of Mito Kids/help-to Jean

[Guest guest]

Thank you so much for this post, Jean. Last night I was keeping myself up thinking about all of the "what-if's" and wondering how many parents worry about how many years their children may have left, while at the same time praying for God to give me peace and to live (and help Maddie live) each day to the fullest. This is what my life has been about since Maddie was born- enjoying every small accomplishment, every experience, realizing how very important these things are that most take for granted. I've learned to slow down, to take a minute, to make the time, because you're right, none of us knows just how much time we have left. As much as I worry as we get ready for upcoming appointments, lab results, etc., a strong part of me has learned that if it isn't affecting me today, then it isn't as important as my mind is making it, and it certainly isn't worth losing sleep and having panic attacks over. (Although sometimes I just can't help it.) I am thankful I have been able to find peace through a relationship with God, and I find the words of the Bible so comforting. Once again, thank you for reminding me of what I was struggling with last night.

Holly Rubio

Re: Anne R-Future of Mito Kids/help

Dear Anne;There is nothing in this life that is assured except that we are born to die!With this as an assurance, it then behoofs us to take one day at a time and maximize our living day by day, hour by hour and minute by minute.Dr Boles gave you the only answer he could ... an answer containing hope and an allusion to percentage. Even on this list there most likely is a greater percentage of less involved or profound Mitochondrial symptomatology. Therein lies your hope, my friend. Also, take hope from the exponential learning curve upwards in Mitochondrial medicine in the past 20 years. In 1985, I was trying to find out what was wrong with me. In 1991, the technology had advanced to the point that I could be diagnosed! In 2004 ... you really don't have the expectation of having to wait 6 frustrating years for diagnosis!Can you possibly live life to its fullest unless you have hope? When your little boy finally has a diagnosis, will he be the same little loveable charmer the minute after you know his diagnosis as he was before the words are delivered to you? Will you love him less once he has a "label"?In an odd twist of fate, parents of an obviously disabled child are luckier than the parents of a child who runs out on the street and gets killed by a passing vehicle. These suddenly bereaved parents have never been forced to face the reality that our hold on our lives is tenuous. These parents have never had to make the conscious decision that the families living with Mito have to make, namely the decision to live life to the fullest now because tomorrow your circumstances may change!Take hope, Anne, and run with it. It is what will bring joy into your life and replace that fear that every parent there ever was has in the beginning!With hope,Jean Shepherd, granny with Mito diagnosisAReckling@... wrote:

I did ask the question to Dr. Boles last night and he said that he sees many mito diseases that are not progressive and don't end up with cognitive problems.I guess, though, I don't feel assured. After last night's chat, I start thinking, if they aren't able to say that muscle biopsies are definitive, and labs shift from normal to not normal often, then how can I feel assured that my son (if he even does have mito) has one of the 'non-progressive' forms? How can I be assured that he's not going to have a cognitive regression?Any ideas?Anne R Please contact mito-owner with any problems or questions.