Living with Cutis Marmorata Telangiectatica Congenita

By Barbara, Cutis Marmorata Telangiectatica Congenita, United States, November 12, 2018

Ella Portrait

Six year old Ella, the daughter of Britney, represents the many children in southern Illinois who receive services through TLC.

Ella was born with an extremely rare syndrome called "m-cm" or "m-cap". Ella has an extensive list of medical issues for which she is seen by seven specialists at St. Louis Children's Hospital. She has had countless hospitalizations, procedures and surgeries. If you had the privilege of knowing our ray of sunshine, you would be shocked to know all she has had to endure.

Ella didn't walk until almost 2 years of age or speak a word until close to four. Thanks to multiple therapies starting as an infant, she has overcome many hurdles and is now catching up in all areas.

Ella and her family are inspirations to all who know them as they demonstrate what can be accomplished when children have the care and unconditional love they need to maximize their potential to overcome a disability.

https://www.wpsdlocal6.com/2018/09/10/telethon-of-stars-2018-ella/

http://www.telethonofstars.org/illinois.php

 

Find others with CMTC on RareConnect, the online platform for people affected by rare disease.

 

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