Our daughter...

Elouise is a sweet eleven year-old little girl. She has a smile and a personality that will touch your heart. Born in 2005, she initially showed no symptoms of any neurological conditions. She began walking, running, and playing just like any other kid her age.  Then, around age 3, she started to pull her right arm up when running. Someone suggested we get an MRI. We did and our whole world was shaken. Her MRI showed delayed myelination and an under sized cerebellum. Thus began our endless journey of test after test. Every body organ was tested, but no definitive cause was identified. We finally concluded she must have had an in vitro stroke which would explain her right side weakness. However, over the next few years, her condition deteriorated. 

Now she cannot walk without assistance, much less stand, and she has no balance. She has lost use of some of her gross and fine motor functions, which requires us to feed, bathe, dress, and mobilize her. Her receptive and cognitive skills are strong, however her inability to clearly speak impairs her communication. A condition called Dystonia causes uncontrolled muscle movement in her arms and neck, which is very painful. She receives Botox injections quarterly under anesthesia to help calm her muscles. Along with muscle relaxants, this is the only treatment that has helped so far, but it is diminishing in its effectiveness. Recently, she underwent surgery forpartial hip subluxation due to the impact this disease has on her muscles.  We have seen many many doctors and therapists, most of whom are only able to treat the symptoms and not the cause. 

Through all of this Elouise has been a trooper. She attends school regularly and works hard every day in physical therapy. Whether she is riding her bike, a horse or exercising in the pool, she keeps smiling unconditionally. We have never heard her complain or ask why she is different from her friends.  She is a blessing to everyone she meets!

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