Welcome Friends!
Mackenzie K.
Connecticut
Birth Date - February 21, 1999
Main Diagnosis - Mitochondrial disease
THEME: Disney moviecharacters - pink
Biography
Mackenzie was born two months prematurely the second of identical
twins. the first several weeks were spent in the NICU then she came home. In the
first year and a quarter Mackenzie developed at an average speed, she walked she
talked and did all the things a toddler should do, then quite suddenly both she
and her twin started to lose their language and skills. At around 21 months
along with her twin sister she was diagnosed with severe autism and OCD, ADHD
and an anxiety disorder.
We began working with Birth to 3 immediately and when the girls turned 3 the
girls started our local public school, where they promptly regressed. We filed
for due process with the district and started the lengthy process to have the
girls outplaced to a special education facility where they gradually relearned
the previously lost skills.
For a short time we really believed the autism was the only thing that was wrong
or "different" about them but it soon became very evident that this was in some
ways just the tip of the iceberg.
Over the past 13 years Mackenzie has been followed by the same dedicated and
professional medical team who have all come together to work with one another
and our family so the best care can be given to the girls. In the past decade
many additional diagnosis have been added such as carnitine transport
deficiency,CP,thyroid disorder and bleeding disorder, genetically accquired LQT
syndrome. Telangiectasia's in the pons of her brain along with dural venous
malformations and gastroparesis and cyclic vomiting among many many other
disorders. Most notably, in the past two years Mackenzie's health has taken a
significant decline with severe ataxia and hypotonia. muscle loss in her face
causing many choking events as her muscles in her mouth and throat are failing
and many other issues. It was such a rapid and severe regression that prompted
her medical team to explore with further testing. Testing revealed that the
children have a severe deleterious mitochondrial disease that explains
her decline.
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