My daughter faces a disease so rare, just 1,000 cases are found worldwide

July 6, 2018

My daughter, Mackenzie was diagnosed with an extremely rare auto immune disease called Parry Romberg Syndrome. One in 6-million are diagnosed. That equates to maybe 1,000 cases worldwide. 

 

Her cells basically attack themselves. This results in the left side of her face wasting away, and there are many issues associated with that - seizures and damage to her optic nerve...just to name a few. 

 

Despite her reality, she is a joyful, energetic 9-year-old, who is headed into fourth grade. She has NOT ONCE felt sorry for herself since receiving this diagnosis. Mackenzie has strength that comes from her faith. Anyone who meets her can see that immediately.

 

Kenz's response to the unfair hand she has been dealt has always been positive. Her teacher told us that when Kenz talked about her upcoming surgery, she exclaimed in an enthusiastic voice - "Guess what, I won't loose my eye!" It made everyone laugh. 

 

We are headed to Wisconsin for ten days for her upcoming surgery and all she requested was a cheese hat. This is my silly, lovable girl. 

 

Mackenzie wants to someday do ministry work, and maybe, "be a Sister" she tells me. She still has a long journey ahead. After this surgery, the tissue on the left side of her face will be removed. In another six months, new tissue will be implanted. She will also have to have a bone graft next year to repair her cleft palate.

If you wish to learn more about Mackenzie's medical journey and ways to help give back to this sweet girl, click here.

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