This is Miles

This is Miles. He has Dravet Syndrome. Miles is 5 years old.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:

behavioral and developmental delays
movement and balance issues
orthopedic conditions
delayed language and speech issues
growth and nutrition issues
sleeping difficulties
chronic infections
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives. Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

Miles is the happiest kid, always greeting you with a smile. He is my Grandson, he calls me Nanny. Miles needs constant care. Because in addition to the seizures, he has issues with light and patterns. He cannot go outside when it is sunny, the sun's reflection on certain objects can trigger a seizure. The house has to be kept dark, again the sun coming through a screen on the back door or through a window can also trigger a seizure. He can have a seizure if he gets overly excited. He cannot participate in a lot of things a normal child does, Christmas or Thanksgiving with the family, swim in our pool, it is just too risky to do. They had to put black tint on their car windows, so when they take Miles to the doctor the sun coming through the windows would not bother him.

Because he needs constant care, his parents cannot both work at the same time. Someone has to be with him at all times, to redirect him when he may be staring at a pattern the sun has given off or to administer the medicine if he has a seizure. He has to be followed around everywhere. When he sleeps, he has what are called silent seizures causing twitching.

My goal is to help my son and daughter-in-law financially, to ease their burden. Right now, they need to get the backyard shaded so Miles can go out and play. To do this, we want to plant a large tree (already full grown). They need to have a company dig (probably with a backhoe or a bobcat) a hole large enough to plant the tree, and then you need a crane to transport the tree over the house into the backyard. We also want to install some kind of backyard cover over the patio.

Please consider helping Miles and his family. Please visit http://www.dravetfoundation.org/the-foundation/our-story to learn more about this devastating condition.

Thank you for considering my request.

Terri (Miles' Nanny)
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    • $10 
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Organizer

Peace Onearth 
Organizer
Los Angeles, CA
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