What Is a Spotted Zebra?

It is said that during medical school most students are taught that when they hear hoofbeats to think of horses and not zebras. Zebras (at least here in the US) are pretty rare outside of a zoo but horses are a common sight. This approach is great. Until that student becomes a doctor and their patient is in fact that all illusive zebra...or in our case the even more rare...spotted zebra.

What does a spotted zebra look like?

 I know this looks like just another little girl right? An adorable one at that! But she is the one and only Spotted Zebra! Lily Grace aka BoogaBooga or Lulu is currently 6 years old and full of spunk. She doesn't let her quirky genetics or physical limitations hold her back and she definitely doesn't follow any book! Her medical list if laid out is probably taller than her but we try not to pay too much attention to that and focus on the less rare parts of her, like her love of ice cream and playing outdoors.

What makes her a Spotted Zebra is this (I copied this from her Facebook page Love 4 Lily):
Single Mutation LPIN2 - Not Majeed Syndrome
Undiagnosed Auto-Inflammatory Disorder
Periodic Fever Syndrome
Mutation on ECM1 and STAT3
Kidney Reflux with dilated tubing system and enlarged Kidney and Spleen
Epilepsy
Juvenile Arthritis

Ehlers-Danlos Syndrome
Hypermobility
GERD

Possible Gasteroparesis
Sensory Processing Disorder
Astigmatism
Sleep Disturbance
Seasonal and Food Allergies
Sleep Apnea
Hypotonia
Abnormal Gait
Pronation of feet
Tibial Torsion
Slight Toe Walk
Asthma

Falling Arch

This is another Zebra...this one isn't so spotted but a zebra all the same. She is 7 going on 18 and has me on my toes all the time. Her name is Zoey but I call her Booga or Zozo. She is my firstborn and gave me the first taste of being a special needs mom. Her medical journey began the day she was born but it took years for someone to actually listen to me and connect all her dots. We believe we are still missing some of those dots but we do our best anyway.

So what makes this darling girl a Zebra?
Ehlers-Danlos Syndrome
Autism diagnosed at age 2
Generalized Anxiety Disorder
Attachment quirks
Amblyopia (right eye)
Astigmatism
Chronic Constipation
Voiding Dysfunction
Hypermobility
Severe GERD
Sensory Processing Disorder
Speech and Language problems
Slight hearing problem (left ear)
Asthma
Sleep Disturbance
Seasonal and Food Allergies
Mild Sleep Apnea

Kidney Reflux
Dyslexia

And yep...me. I am a Zebra too. I was pegged as the hypochondriac as a kid and probably as an adult. I now know that all the health problems I have are results of quirky genetics and rotten luck.

I am a Zebra because :
Dysautonomia
Postural Orthostatic Tachycardia Syndrome aka POTS
Ehlers-Danlos Syndrome
Heart Abnormalities
Extreme full body edema
Dyscalculia
ADHD
Mild OCD

 

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