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Being a mom to My Zebra Princess Angie’s Ehlers danlos hypermobility

In 2013 we found out that Angies eyesight was so bad that she could hardly see anything, she had to get glasses with very strong lenses. Our story started in 2016 when Angie was diagnosed with Adhd and a few months later with #PetitMalEpilepsy. Two months later Angie wanted to commit suicide. Her neurologist booked an urgent appointment with a psychiatrist and she was also diagnosed with bipolar 1. With her always getting sick and bruising often, alarm bell started ringing. For me as a mommy i just knew something was seriously wrong. I took her to a pediatrician and she suggested we do some tests including tests for leukemia.

Well by the time the tests came back, i was finished! Thank goodness it was all negative. But our little Angie was still sick and we still had no answers. Vomiting nearly every night and crying of severe pain and being very tired and getting terrible bruises all over her little body, and not really eating the concern rose even more Promising myself not too give up, i carried on looking for answers and did a lot of research, by then the Dr reffered us to a Rheumatologist. That is when Angie was diagnosed with Ehlers danlos hypermobility syndrome and a mild dose of #posturalOrthostaticT

achycardio syndrome.

Our lives as a family changed from letting her be a normal 8 yr old to being overly protective and constantly checking that she doesn’t hurt herself, when playing or doing sports at school. Sitting up at night with her when shes sick and in lots of pain and when shes so hot she cant sleep because she cant control her own body heat. She still sleeps with nappies at night. We had to get a tens machine to manage her pain at home as well. My daily routine had to change, i can only work in the mornings, cause i have to sit with Angie in the afternoons and do homework, and take her to physio therapy once a week and occupational therapy.

Angie has to wear braces on her ankles, back and hands when she plays netball to protect her joints. She also had to get a special cushion to sit on and a reclining

board for school to help with her back and to improve her posture. People in the general public should know that our zebra kids might look normal but everyday life is a major struggle to them. They are constantly fatigued and in pain. Their lives revolves

around hospitals, Dr’s appointments and therapists and lots of medications. For me as a mommy of a little zebra child its very very hard to see my child go through so many things and so much pain. I have to be very patient and understanding and lovable at all times, even though it can be frustrating. I have to work, run a household and be a mommy to my other two daughters as well.

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