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Michelle's liver kidney transplant

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Hello and thanks for being here.  My wife and I (Mary and Robert) are parents of Michelle, our 33-year old daughter who needs a liver/kidney transplant.  Michelle has Methylmalonic Acidemia (MMA), a recessive genetic disorder that does not allow her body the ability to breakdown the proteins in food to the essential amino acids needed for normal growth.  Instead, her body creates high levels of acid and ammonia which are directly toxic to her brain and organs.  

Michelle had a liver/kidney transplant 20 years ago, which is why she's still with us.  But, over time, in her body's toxic environment, the function of those organs have greatly diminished.  She's been on kidney dialysis 3 days a week since February of 2018 to help her body clear some of the methylmalonic acid.  She needs a healthy liver and kidney to sustain her as she awaits a potential cure for her disorder, made possible through the efforts of experts at the National Institutes of Health (NIH).  

Mary and I have been blessed to have 4 children.  Michelle is our second born.  Her brother, Jim, 2 years older than her, was, thankfully, born unaffected by this disorder, making Michelle's diagnosis seem all the more alien.  Whoever heard of this 21-letter, 2 word disease before?!  Six years after Michelle's birthday, we had Stephanie and Andy come into our lives, themselves born 2 years apart, though both born with MMA.  Each of our MMA-affected children had their own, individual formulas and medications. (It is a genetic disorder, but they are individuals.)  Steph and Andy also had their own complications and were never healthy enough for transplant.  They passed away in 1998 at ages 8 and 6, respectively, Andy 3 weeks after Steph.  

Michelle's brother has 2 healthy boys of his own, unaffected by MMA.  Being a recessive-gene disorder, MMA requires both parents to be carriers to even have a chance that it will appear.  Neither he or his wife are!  Michelle is very-much looking forward to being a loving aunt to her nephews for many years to come.  Michelle presently lives on her own in an apartment.  Her weak muscles prevent her from driving but she has mastered all of the bus routes in the city.  She also takes Uber.  She cannot work at a paying job because of all of her medical appointments, setbacks causing hospital stays and dialysis three days a week..  When she can, she volunteers at an elementary school and a soup kitchen.  She loves to sing and goes to karaoke almost every Saturday.  She attends concerts and movies as well.  Michelle has a beautiful spirit and is so brave during the many procedures she endures.  She is very special to us.  

We started this campaign to help us take care of Michelle's uninsured costs.  Items such as hospital and doctor fees not covered, transplant-related lifetime-long medications and copays, relocation expenses to access treatment, home healthcare, medically-recommended rehabilitation, transportation costs (the hospital is 137 miles from home) and the cost of MMA labs, to name a few.  Any amount you can donate is greatly appreciated!  However, if you can't at this time, please keep Michelle in your prayers and let others know of this campaign.  Thank you.

Donations 

  • Karen Bezemek
    • $100 
    • 6 yrs

Organizer

Rob Crook
Organizer
Comstock Park, MI

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