Kennedy standing

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Today we tried out a supine stander with Kennedy. I will have to get a pic tomarrow. She really seemed to enjoy being in a standing position again. I think it made her feel like how she used to when she was able to stand up with her walker. She cant not walk or anything in this, but she was smiling a lot and was at our eye level. Her left hand is getting stronger and she was able to really grab and play tug of war with a toy today also(while in her wheelchair). I am hoping that using the stander helps her become more aware of the left side of her body. The stander may help lengthen her muscles and prevent contractures. It also is shown to help GI, urinary and respiratory issues.

Elena's Hope Charity Dinner

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We were very blessed to have been invited to go to a charity dinner to raise money for mitochondrial disease. The dinner was in honor of Elena. Her family and friends made us feel so welcome and did such a great job with the dinner/auction. It was a lot of fun and hopefully we made some new friends. Elena is such an adorable little girl. Please check out http://www.elenashope.org/

Letter to Editor

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(Here is the letter to the editor I submitted to our local paper)


Help find cure for mitochondrial disease

Years ago I realized I could deal with the struggles of having a child with a disability.
Until recently I didn't realize how difficult it would be to possibly lose that child to a progressive disease.

My daughter has a mitochondrial disease. Although she had delays, she was doing well and making progress. Within weeks her health went downhill fast. She started having seizures and GI issues that continued to get worse each week.

She spent Christmas in the hospital having seizures and vomiting frequently. The next day she was placed in an induced coma to try to stop the seizures. With our family by her side, we waited until New Year's Day to see our daughter open her eyes. A year before, we never would have imagined we would be anywhere near a hospital.

According to United Mitochondrial Disease Foundation, every 30 minutes, a child is born who will develop a mitochondrial disease. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease.

Exact numbers of children and adults suffering are hard to determine because so many people who suffer from mitochondrial disease are misdiagnosed. We now know the disease is approaching the frequency of childhood cancers.

Lack of awareness is why my family and I never realized the severity of this disease. We never realized that one week our daughter would be healthy and the next she would be fighting for her life.

Sept. 21 through 27 is Mitochondrial Disease Awareness Week. As UMDF raises money for research some children lead healthy lives while others are severely affected and fighting for their lives.

Please help all those fighting, like my daughter, by helping raise awareness. Awareness can raise much-needed money for researchers to find treatments and hopefully a cure for mitochondrial disease.

Colleen B.

Support Make-A-Wish Foundation

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World’s Largest Ice Cream Social
Thursday, September 25, 2008 Find your local Cold Stone Creamery at www.coldstonecreamery.com

Cold Stone Creamery will give away a free 3 oz. Make-A-Wish® Ice Cream CreationTM to each customer from 5-8 p.m. on Thursday, Sept. 25.
The Creations were developed using two of Cold Stone Creamery’s new ice cream flavors, Nutter Butter® and marshmallow. Wish child Emily developed the Creation made with Nutter Butter ice cream mixed with yellow cake, Kit Kat® candy and white chocolate chips. Wish child Jack combined marshmallow ice cream mixed with OREO® cookies, chocolate chips and fudge to create the treat named for him.
In exchange for Emily or Jack’s Creation, Cold Stone Creamery is requesting that a donation be made to the local chapter of the Make-A-Wish Foundation.
Find your local Cold Stone Creamery at www.coldstonecreamery.com

As many of you know Kennedy has received a wish from Make-A-Wish foundation so we are always trying to promote awareness to help this great foundation. So go enjoy a cool treat and think of the many children like Kennedy that benefit from all their generousity!

Promote Awareness

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This Week is Mitochondrial Disease Awareness Week.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

http://www.umdf.org/

Welcome to our Blog

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Hi everyone. I thought I would make things a little simpler and do one spot for everyone instead of doing the seperate sites for the kids. Make things a little more family related. So welcome to our new family blog. It might take me a while to figure things out on here.