Spreading Hope…a hat at a time.

Posts tagged ‘Mitochondrial Disease’

A Zebra hat for a Mito Kid


We recently connected with Ariadne (known as AJ affectionately) who is battling a genetic blood disorder called Cooley’s Anemia, because of this her body can not make ANY red blood cells and this causes many health issues.  She is also is fighting rare genetic disorder that is a type of Mitochondrial Disease along with Sinus Tachycardia, Osteoporosis, paraparesis, gilosis of the right frontal lobe, learning disabilities, and more. Ariadne is also hearing impaired and wears hearing aids, due to a life saving medication that she has to take every night, through a needle sub-q for 12+ hours & Ariadne is also 2x stroke survivor.

Before connecting with AJ, I admit I was not aware of Mitochondrial Disease, so I did a google search.  I found a lot of  information from United Mitochondiral Disease Foundation (link)

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

To show AJ support and become one of her prayer warriors, please visit her on Facebook (link)

At the young age of 21, Ariadne has already been through:

8,100 + Dosages of antibiotics (Mostly penicillin)
5,000+ Iron Chleation treatments
1,000 + pokes, blood draws, I.V’s & port accesses (combined)
300+ units of blood
20+ Fevers
15+ MRI’s; MRA/MRV; T2* & R*2 (Brain, heart, liver, knee, & Spinal cord) combined
12+ Dexa Scans from head to toe
12+ EKG’s
10+ Sleep studies
10+ X-rays (chest, arms/wrist/shoulder, legs/knee/hips)
10 + Regular Echo-cardiograms (ECG)
7+ Pulmonary function Test (PFT)
7+ ER visits
7+ Hospital stays
5+ Surgeries
5 – Growth plate fractures
5 – Growth plate fractures
4 – Port-a-caths placements & 3 removals
3+ Infections
3+ CT Scans (CAT SCAN of Brain & abdomen)
3+ Ultrasounds (abdomen)
3 – 24hr Holter monitors
2+ EEG’s/Ambulatory electroencephalography (AEEG)
2 – EMG’s & Nerve conduction tests
2 – Stroke like episodes
2 – Bubble Echo-cardiograms
2 – Dye studies of my port
2 – Liver biopsies
2 – Doppler Ultrasound
1 – Skin biopsy
1 – Esophageal Echo-cardiogram (EET)
1 – Colonoscopy & Endoscopy
1- Laryngoscopy
1 – Month long Holter EKG (that ONLY lasted a week because she had enough episode in a week that her doctor could tell that she needed be on medication)

I am in awe of Ariadne and all other Mitochondrial Disease Warriors and would like to spread awareness about their plight.   Ariadne made a YouTube video to spread awareness of what Mito Kids experience as routine.  Please view it here (link).  It’s titled “Imagine a World Without Mitochondrial Disease”, wouldn’t that be wonderful?

Fighter 2