We have learned that a world with disabilities is not a scary place, but a place where the most important things in life often come first, and each milestone, no matter how many times we have to hit it, brings tears to my eyes. We have cried more tears this year than we have in our lifetime, but we have found strength within us that wasn’t there before.

 

 

 

 

 

 

 

 
Elena's Story

Elena currently suffers from intractable seizures and has recently been diagnosed with a Mitochondrial Cytopathy.

On April 15th 2005, Children's Hospital of Wisconsin called and told us that they needed us to come down immediately and to pack a bag. We had 2 long hours to think about the possibilities but never would I have put us at where we are at today. As a mother I knew that something was not quite right with Elena. She was extremely fussy a lot of the time and really had to struggle with things that seemed to come so naturally for her older brother. About a month prior to this call Elena started a weird gulping thing that occurred in a hiccup like pattern in which she would scream in between. Several people told me they were acid reflux. We were about to find out the truth.

Elena was diagnosed with Infantile spasms--a damaging form of epilepsy. We did several tests, genetics, spinal tab, MRI, labs and everything came back normal. Yet no matter what treatment we tried Elena's seizures continued. She sometimes had over 100 a day. She stopped smiling, laughing, sitting and interacting. All this time the doctors assured us that it was better not to know what was causing the seizures. Yet I felt like I'm sure many other parents do, that there had to be something more.

On the Wednesday before Thanksgiving the doctor called to give us the test result that we feared yet somehow knew in our hearts. Elena has a Mitochondrial Cytopathy. Her muscle biopsy came back extremely abnormal in Complex I and slightly abnormal in Complex IV. This means that Elena's cells are not properly using the energy that they need to grow and survive. Mitochondrial disease can produce a wide range of debilitating and sometimes fatal symptoms. Today there is no cure for Mito disorders only treatment to slow the progression of the disease that works in a small percentage of patients. The good news is that God performs miracles every day and that I know that all of you are praying for the same thing we are.

Elena is a fighter. She has been poked and tested more than most of us. We have well over a month in the hospital and completely changed her to the diet to the ketogenic diet in an attempt to control the seizures. She is a trooper and thankfully takes medicine very well. She certainly knows what she likes and doesn't and always lets us know. Recently she has had surgery to place a G-tube. She now receives everything through the tube because she was silently aspirating her food and liquids. We were very blessed that we caught this before it caused a major problem. Elena has taught us so much about life, living and God's goodness and mercy. I pray every day that God gives her healing, strength, and peace.

Thank you for you continued prayers and support. We have been blessed with a terrific network of friends and family who love us. I can't tell you how thankful we are for you. We have been blessed with some of the most amazing doctors, nurses and therapists who care for my daughter like their own. We have met so many people that we have fallen in love with because of Elena’s illness and are overwhelmed by your desires to help. Thank You.

Please know that through everything that we have faced in the last year that our hope is great and our faith is strong. We know that through all things God works for the good of those who love Him.

Love,

Mindy & Eric

P.S.  To keep updated on Elena's Story, please click on the link, below: www.caringbridge.org/visit/elenashope