Sophia and Emmaline are adorable sisters who, along with their other 3 siblings, have been diagnosed with Ehlers Danlos Syndrome and Dysautonomia. Ehlers Danlos Syndrome affects multiple body systems. It causes the collagen recipe for blood vessels, ligaments, tendons, and intestines to be incomplete. Dysautonomia is the dysfunction of the autonomic nervous system, which regulates digestion, blood pressure, body temperature and sleep. EDS can also cause heart problems, which will eventually lead to a need for open-heart surgery to repair the blood vessels. These medical problems have caused degenerative chronic conditions which affect sleep, digestion, joint stability, social development and blood pressure. They visit doctors weekly.
Sophia is a silly 8 year-old girl with EDS and the weight of the world on her shoulders. Sophia has also been diagnosed with ADHD, but her poor sleep is probably the cause of her daytime behavior and concentration problems. She also suffers from migraine headaches. Sophia is part of an online public school, which allows her to rest and take many breaks during the day. She eats many times during the day but has some digestive problems and only weights 50lbs. She receives weekly IV treatments. Sophia will never play sports like other kids and she will probably get sicker like her older siblings. Sophia is very sweet and never asks for anything. She usually wants to buy gifts to make her siblings feel better. Sophia, like most kids, wants to be normal and do normal kid things, but for now it is just not possible.
The youngest of the family is Emmaline. She is a spunky 5 year old who loves to ride her bike. She was diagnosed in 2010. She also carried a diagnosis of mild Autism, ADHD, and Apraxia of speech. She has responded well to therapy and has graduated from early intervention. For now Emmaline is mostly frustrated by the limits of ADHD and poor digestion. Emmaline brings out the good in all her siblings and reminds them all that it is okay to fall down, get hurt, and get back up with a smile. She is one tough cookie, and an example to all that, even through hard times, there is something to smile about.
Sophia and Emmaline’s family continue to seek specialty care within their financial capabilities, which means they have never been to an Ehlers Danlos Clinic or Dysautonnomia Clinic. They hope to one day be able to pay for the trip to the experts, but for now they are relying on a team of specialists in Seattle to help manage symptoms.
They would like to thank you, Westview High School, for adopting them and helping them on their journey through these illnesses. It is hard when kids look normal on the outside, but are suffering from many debilitating symptoms on the inside. Your support and care is tremendous!
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