Makenna Suffers from M-CM and Proteus Syndrome – Mom Is Her Number #1 Advocate

July 10, 2012

Meet our beloved Makenna Caroline, born March 22, 2008.  Makenna is a bubbly, happy four year old who has a daring, will-try-anything attitude. Makenna presented with various developmental challenges from birth.  She was given an initial diagnosis of Klippel-Trenaunay-Weber (KTW) syndrome the day after birth, then six months later, was thought to have Sturge-Weber and Proteus syndromes.

It was not until she was 17 months old and after three surgeries related to hydrocephalus, she was diagnosed with M-CM (Macrocephaly-capillary malformation) and Proteus syndromes. Both diseases being rare, we began our journey along with other families in the M-CM support group who have supported us through countless surgeries and many unknown answers about Makenna’s future.

Makenna Caroline enjoys chocolate milk, boating on the lake and taking walks while she rides in the wagon. She attends Fairborn Primary Preschool and lives at home with her mother and stuffed animals. She has a smile that will light up any room. She meets no strangers and makes a forever friend.

As her mother and number one advocate for her and rare diseases, I am blessed to have another year with her!  I look forward to many more birthdays.

I would also like to thank all organizations, including GlobalGenes, for their hope, education and inspiration!

Ms. Clark


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