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.
What do you see?
Nov 15, 2013 9:01amIf you take a look at their recent fall pictures you will see what I see; 2 growing kids who happen to be pretty adorable. You will see 2 healthy looking children who look full of energy and life. You will see 2 kids who love each other and 2 kids who don't seem to have a worry in the world. Yes, that is what you see, but if you look deeper you will see so much more.
I look at Alex. I see a strong young man who is deeply faithful. He commented just the other day how he might like to be a priest someday if they would let him get married. He prays and has a special connection to angels.
I see a child who is learning how wonderful reading can be. He is finishing up his last book in The Hunger Games series and I love when he retells the story to me. I often find him teary eyed, or excited depending on what part of the story he is reading or retelling. This used to be a child who struggled with reading. His hard work has paid off.
I see a child not afraid to stand up for what is right whether it is telling a child to stop being a bully or standing up for his friends or sister. He is very loyal to those he loves.
I see a child who worries. His worries as so much bigger than yours or mine. His worries are worries that old people have, not 10 year old boys. His heart is so heavy at times. Rest assured we are doing all that we can to help him through this.
I see a child who loves to laugh and make others laugh. He is the child who is full of one and speaks with such expression that there isn't anything you can do except laugh with him sometimes.
I see a child who is tired. He is tired of being sick and he is tired of mitochondrial disease stealing his life.
I see a child who longs to do one simple thing, live. He wants to make it to high school, wants to learn to drive a car, wants to go to college and wants to have a family someday. He doesnt want a bucket list. He wants to grow up.
I then look at my Lauren and I see a little girl who has already beaten the odds and proven the doctors wrong. We were told after her first brain MRI that she would never walk, talk or say Momma. I remember thinking that I would never get to see her push a baby doll stroller or dance around a room. She is now running, dancing, talking and singing and pushing her baby dolls all around the house. I love when God's miracles are so obvious.
I see a little girl that is strong willed. A girl who gets what she wants. I should have known all those years ago when she would grunt and holler as she was trying to reach a toy or struggle to lift her head in therapy. If you gave her the toy she would push it away as to say, "No, I'm going to do this myself. You're not helping me. I can do this". While her will can be challenging at times, it has served its purpose well and I wouldn't change it for the world.
I see a girl with a fantastic imagination. Just last night as I was cooking dinner, she was running her own restaurant with her toys. The special was "Hoppa-Pita-PapaRoast" and she was the hostess, server and chef. She took her jobs very seriously and it just made me smile.
I see a girl who loves to have her hair and nails done. This morning she had me YouTube a video for a new hair style. Her reward for getting ready for school without any drama ( which can be a problem sometimes) was nail polish and nail stickers. She is our little fashionista.
I see a little girl who wants to be free from tubes, central lines and face masks. A little girl free from the effects of mitochondrial disease and the treatments needed to keep her well.
When I look at my children I see compassion. I look at them and see love. I look at them and see life. I see two children that are stronger than mitochondrial disease and two children that refuse to give into this horrible disease. I see two children filled with the Holy
See, when I look at my children, I see faith, hope and love. I am so thankful that I get a first hand look at how they are touching and shaping the world. I hope that if you look a little closer at these two amazing kids you can see all that I see forif you do, it will change your life forever.
What do you see?
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