Welcome to our journey. Both Alex and Lauren have Mitochondrial disease. We do not know what the future holds but we make the most of everyday. We are so thankful to our family and friends for laughing, crying and just being there for us. Remember "Faith makes things possible...not easy" Here is our life.....
For those of you that don't yet know Alex, he was born April 18, 2003. He is a spunky kid full of life. He was diagnosed with mitochondrial disease Complex I defect at age 3. He has symptoms from birth. At this point his main problems are: severe GI dysmotility. He has a G-J tube and is TPN dependent. He has chronic constipation as well as gastroparesis. He is lactose intolerant and has pancreatic insufficiency. He wears BiPap for central apnea and CO2 retention and supplemental oxyen for increased endurance. He has what is believed to be central neuropathy causing tingling in his fingers and toes. He has autonomic dysfunction that causes a variety of problems including heat and cold intolerance and blood pressure instability. He has some hyptonia and gets PT and OT weekly. He gets tired very easily. He has difficulties with sensory integration and processing. He attends a normal kindergaten with a private RN. Alex is a joy to be around and anyone who meets him quickly falls in love.
Lauren was born October 7, 2007 at 35 weeks. She has an abnormal brain MRI and has some mild developemental delays. Her biggest delay is in her speech. She suffers regressios in her speech with illness and anesthesia. She has significant reflux and had a nissen fundoplication and G-tube placed at 4 months old. She is the opposite of Alex is the pooping department. She dumps meaning her food moves through her too quickly. She has difficulty maintaining and gaining weight. She ahs some autonomic dysfunction as well. She has difficulty maintaining proper fluid balance and becomes dehydrated very quickly. She also gets swollen very quicly as well. She is heat and cold intolerate. She receives PT, OT and speech. She is just too cute for words.
Mitochondrial disease is devastating. The energy producers in his cells are not functioning properly leading to cell death. Cell death causes the organs not to function properly. Mitochondrial disease is a progressive and often life-threatening disease and there is no cure. Go to www.umdf.org for more info.
My husband and I are truly thankful for our children. It is hard not knowing what the future for them holds. We do know that each day with the kids is a gift in which we intend to truly enjoy. Thank you for visiting their site!
Please pray for all those who are researching this disease as hopefully they will find a cure in time.