Hi, my name is Alexis. I am 14 years old and have been diagnosed with a rare condition.
Motto: Never Stop Trying
Champion Teammate: Karen Quintos
High School Team: Lake Travis Cavalettes
Alexis was born with a visual impairment, and facial weakness. We enrolled her in a study at Boston Children’s Hospital when she was 3 months old. At the age of 7 she was diagnosed with CFEOM (congenital fibrosis of the extraocular muscles), now defined as TUBB3 E410K syndrome.
There are less than 30 known cases in the world. Doctors are still learning a great deal about this genetic condition, but they have linked it to cyclic vomiting syndrome (CVS), Kallman’s syndrome, and peripheral neuropathy. In the last 1 ½ years, Alexis has unfortunately developed the symptoms of cyclic vomiting.
Currently there is no cure, or even great treatment options for CVS, and Alexis often requires IV fluids and meds when she has an episode. Despite all Alexis has been through, she has the most positive attitude and is a kind and caring person. We remain hopeful for more information on this condition and better treatment options, or a cure in the future.
|Jeff Pierce||09/21/2018||$100.00||Behind you all the way, Alexis!||Jenna Ogundipe||09/20/2018||$100.00||We love you!!!||Dena DeForge||09/16/2018||$100.00||We love you Alexis!||Mary Jeczalik||09/11/2018||$250.00||Alexis,You are a great kid and your family is so proud of you! Your positive attitude and your kindness to others shows all the way to Chicago! George & Mary Ann Jeczalik||Karen Paolino||09/10/2018||$111.00||May a cure or relief come to you sooner than you could imagine||Sarah Mulcahey||09/10/2018||$100.00||You are an inspiration my dear. Love you to the moon and back...and miss you more!||Holly Hannon||09/10/2018||$20.00||Sending love to all of you, Lynne & Bob||Mary Pillsbury||09/10/2018||$50.00||Lynne and Bob, Blessings to you and your family. Love, Mary||Darcie Belisle||09/05/2018||$25.00||We love you sweet girl and think about you and your amazing family all time. Miss you lots!