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Jodie's Story
Allow me to introduce myself. My name is Karen Beutel, and I have three children. Colin (17), Amanda (16), and little Jodie (6). Jodie was diagnosed at ten months with Methylmalonic Acidemia. It was not until she became ill with a chest infection that she never quite recovered from; that it became apparent that something was not quite right. After numerous visits to the GP, and then finally demanding pediatric consultation at the Children's Mater Hospital in Brisbane, we discovered, with the help of Frank Bowling and Jim McGill, that Jodie's failure to thrive was due to a very rare metabolic condition - MMA.
What a shock this was for my husband, Greg, and I, and the entire family. With the help of these two professional men, who became very close friends, Jodie was eventually on her way to recovery. Fortunately for Jodie, she is B12 responsive. So with her medication and low protein diet, she has developed into a bright little 6-year-old. We still have our occasional trysts in hospital, but overall we maintain a reasonably 'normal' lifestyle. Now that we have relocated to N.S.W., we are now under the care of Dr. Christodolou and his metabolic team at Westmead Hospital and attend clinic every 4 months, with regular monthly blood checks.
I have only recently been informed of the MDDA. After having an enjoyable chat with Kerri, and receiving a taped copy of the last conference to peruse, I must say that I am suitably impressed and relieved. Relieved to know that we are not alone, and support is out there. It is enlightening to realize that there is so much research being extended into these areas, and encouraging seeing how advanced technology has become. I was also impressed by the political involvement (not an easy task to accomplish). I applaud the parents and all the members of the association for their dedication and hard work.
We live in Lithgow, a small country town at the base of the Blue Mountains, and up until now we have had no contact with anyone in a similar situation. The discovery of this association is the start of a new chapter in our lives. I hope to become involved and be of some assistance to this worthwhile cause.
Our children are the future
Karen Buetel, April 2003
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