Talia Duff and CMT4J

Julia Glavin and Tyler Starr

Talia Duff is a girl who is known among her community for being a brave, adventurous, and a kind-hearted young girl. Her friends and family explain that Talia, “turned [their] world upside down with her peaceful beauty and her extra 21st chromosome from Down Syndrome.”  

Talia is no different than anyone else, but she has had more than her fair share of obstacles in her ten years. After Talia was born she was diagnosed with down syndrome. Her family and doctors knew there would be some developmental setbacks, but were optimistic about her future. Talia and her family worked hard to develop the motor skills down syndrome was sure to delay and focus on the little things in life. However, as the years passed Talia began experiencing many sicknesses, and with each she began to grow more weak. Talia was slowly losing the motor skills she has worked so hard for and at the age four found herself surrounded by doctors in Boston Children’s Hospital. Shortly after she was diagnosed with CIPD, which is also known as chronic inflammatory demyelinating polyradiculoneuropathy. CIPD is a disease found in the blood and that is seen to be similar to that of multiple sclerosis.

Talia began a rigorous process of trial and error to try and uncover a cure for her diagnosis. She underwent many surgeries and tried several steroids. The steroids made her stronger, but took away from the sweet little girl Talia was. She began to experience fractures from small falls and whenever there was a sign of hope she would seem to be set back further shortly after. Her doctors began to question her initial diagnosis and her parents shortly after heard the worst news of their life. Talia did not have CIPD, but she had a rare disease called Charcot Marie Tooth Disease, or CMT4J. This disease acts like a slow moving ALS causing paralysis and limiting a person’s respiratory capacity. CMT4J disease is so rare that only twenty two known people in the world have it, and there is currently no cure. Talia’s parents were told that she shouldn’t be expected to live much longer than ten years of age.

Talia hasn’t lost her knack for persevering and enjoying life as she is. Only in fifth grade Talia takes pride in her out of school activities such as reading, sit skiing, acting, and tandem cycling. These are incredible accomplishments considering her situation and she enjoys every minute. Among Talia’s community there have been charitable events undergone within the Ipswich schools to help try and develop a cure. In addition, there is a web page called “The Talia Duff Foundation to cure CMT4J” run by Talia’s family to spread awareness regarding CMT4J and to try to advance the technology behind finding a cure. The webpage elaborates on Talia’s story as well as the steps towards finding a cure for the disease. An example of Talia’s community working to help her cause would be when our very own Ipswich High School sold neon shoe laces for five dollars a piece to benefit her foundation.

Friends and Family have learned to “celebrate smaller moments in life” according to her parents. I hope this this article brings awareness to finding a cure for CMT4J and to show just how strong Talia has been.     

 

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