Up Close & Personal: Mitochondrial Disease

Superbellies Mitochondrial Disease G TubeI would like to take a moment to discuss a very serious issue: Mitochondrial Disease.  I was completely unaware what Mitochondrial Disease was until our beautiful niece, Olivia, was diagnosed with it.  Mitochondrial Diseases are very diverse conditions due to dysfunction of mitochondria, specialized compartments in virtually every cell of the body (only red blood cells lack mitochondria). Mitochondria generate more than 90% of the energy required by the body. Mitochondrial dysfunction depletes cells of energy causing cell damage and even cell death.  Organs are frequently affected including: eye, ear (the hearing organ called the cochlea), heart, liver, gastrointestinal tract, liver, kidney, endocrine organs (such as the thyroid gland and insulin-producing cells in the pancreas), and blood. (Source: Rare Clinical Diseases Research Network).

The diagnosis of Olivia’s condition was not clear at first.  Danielle and Mark (Olivia’s parents) went through what could only be described as Hell before receiving a qualified and definitive medical diagnosis.  In the process, they became advocates for their child, as hopefully all parents would in the same situation.  During this entire process, they also needed to attend to their other beautiful children Naleena and Delaney.  As a family, they closed ranks with Grandpa Joe and are tackling this condition head on; with no end in sight but plenty of hope. They are truly inspirational in everything they do.

Along the way since the diagnosis, various aspects of necessary medical care were incorporated into Superbellies Mitochondrial Disease G TubeOlivia’s routine.  Among them was the use of a permanent gastronomy tube (“G-tube”).  Danielle and Mark needed to find a way to secure the G-tube, a major issue particularly for curious children. In the process, Danielle “found a better way” and here it is: Superbellies!    These are custom designed belts that secure J and G tubes for children and come in a variety of fabrics and patterns that will fit your child’s style and interest.  ”G-Tube pads fit G, GJ, J tubes either PEG or Mic Key/AMT. They are used in place of split gauze to prevent irritation to the stoma caused by granulation tissue. The pads are backed with an absorbent material to wick moisture from the site. When moisture sits on the site, granulomas form. The protective belts are made to prevent pulls and snags on PEG’s and button style tubes and come with extension tabs for continuous feeds.

Superbellies is also on Facebook as well as their website.  Just one little thing that may make your child’s life a little easier if they require a J or G tube.