Are all Mito kids the same?

Nope - they sure don't, and you want to know why! Because there are many different types of Mitochondrial diseases, only 40 of which have names. So each and every family and child struggles with this dibilitating disease in a different way.

The daily ups and downs are very difficult for the child and the family, physically, mentally and emotionally. One day, we will be overjoyed that our child (who is often significantly delayed behind his peers) reaches a milestone like sitting up, eating a Cheerio, putting two words together or remembering a color or shape. Just as we get our hopes up that progress is being made...BAM...a crash. The next day, the child becomes floppy and unable to sit up, unable to digest his food or unable to utter a single word.

Many mito children require medical equipment like special wheelchairs or adaptive seats and the insurance companies have the nerve to deny coverage and call those things "luxury items". Can you imagine? A wheelchair to get from point A to point B is a luxury item.

Many of these kids are unable to sustain life by eating orally and require feeding tubes, special formulas, etc. Some are fortunate to have coverage for these things, others have to pay out of pocket for all of their expenses. The medications are often too numerous to keep track of without a notebook as some kids take well over 30 doses of medication daily. Since there is no cure, much of the treatment for mitochondrial disease is based on vitamins and other supplements, which you guessed it, are not covered by insurance and tend to get quite expensive.

Almost all children with mitochondrial disease require therapy which may include physical, occupational, speech and behavioral therapy for countless hours each week. Depending on the severity of the child's health needs, some are able to get home health and respite services to help care for the kids or just give the parents a break to do something so simple as to run to the grocery story.

So back to my original question... are all mito kids the same - No but they are all special and they all deserve a cure!