My sweet nephew Shawn

Recently, my brother Jeff's oldest son (my nephew, Shawn, above) was diagnosed with Mitochondrial disease (MITO), a devastating disorder that occurs when the mitochondria of the cell cannot generate enough energy for the body's demands. Shawn's diagnosis means that we've identified the source of a history of medical problems with which he has suffered since infancy.

There is no cure for MITO, but there are things that can be done to improve his symptoms and slow progression of the disease.

In an effort to support Shawn and his family, and to increase awareness of the disease, I dedicate this blog entry to them. We love you Shawn! xoxo Auntie Leslie and Uncle Alex

In September, Shawn's mother, Sarah, took an active part in a campaign to raise money and awareness for MitoAction as part of Mitocondrial Awareness week (http://www.mitoaction.org/) She raised just over $1,000.

There are many ways you can help to raise awareness, and of course, monetary donations will help. Please visit http://www.mitoaction.org/what-can-i-do for a list of specific actions you can take. Please consider one or all of them.

The most common symptoms of the disease include (and many have already affected Shawn) include:

*Poor Growth
*Loss of muscle coordination, muscle weakness
*Neurological problems, seizures
*Autism, autistic spectrum, autistic-like features
*Visual and/or hearing problems
*Developmental delays, learning disabilities
*Heart, liver or kidney disease
*Gastrointestinal disorders, severe constipation
*Diabetes
*Increased risk of infection
*Thyroid and/or adrenal dysfunction
*Autonomic dysfunction
*Neuropsychological changes characterized by confusion, disorientation and memory loss.

MitoAction's Goals are:
*To improve quality of life for adults and children affected by mitochondrial disease.
*To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases.
*To provide specifc and practical materials that help patients to manage their symptoms
*To aggregate and connect the international mitochondrial disease community.
*To create tools which empower patients and caregivers to be advocates for themselves or their children.

Blayney, I know that a prayer from you could be powerful - would you mind?

FYI, here's a link to the fundraising page from September:

http://mito.convio.net/site/TR/Events/Test2fornewwrapper?px=1042261&pg=personal&fr_id=1060&et=hnM0YEWoiKJuJdR2oFzwvw..&s_tafId=1341