Caroline, Rob,Jenny and Tom's skydive
Caroline Jutla is raising money for The Pepper Foundation
Participants: Robert Jutla,Jenny Stewart, Tom Jutla
Story
Our daughter Amber was a perfectly healthy child and at 16 months old, things changed. REGRESSION. She started to lose skills. This then became rapid.
Over the past few months Amber has lost all motor skills, has developed severe mental deterioation, epilepsy, tube fed, can no longer walk, talk or sit up. she is STILL regressing. Doctors have still not found a diagnosis, but have said she has a rare neurological disease that drastically reduces her lifespan.
The pepper foundation give Amber the much needed care she deserves! with amazing support for us her parents, and her 8 year old sibling brother jamie! Caring for Amber 24hours a day, takes up all family life. With the help of pepper, we dont have to do as many hospital trips, and can restore "some" normality into our lives for jamie.
please help us reach our target for this amazing charity! help us support those who are supporting us!!
myself, my husband Rob, my Sister jenny, and brother in law tom, have decided to throw ourselves out of a plane in order to raise money for the pepper foundation! Pepper provide us with vital care and support and we would love to be able to give just something back in return.
As an update to when i made this page, we have recieved a diagnosis!
Amber has been diagnosed with batten disease. A rare degenerative brain disorder. There are four types of the disease and she has INFANTILE BATTEN DISEASE, the deadliest form. Amber is only 2 years old and is not expected to live past 5! The regression will continue until death. She will eventually become blind and bed ridden.
With batten disease, the enzymes that breakdown the bodies toxins, do not work. Her cells continue to build with toxins, killing off the brain.
Our aim is now to provide her with as much care and support to make her comfortable with the help of the pepper nurses!
With batten disease, the enzymes that breakdown the bodies toxins, do not work. Her cells continue to build with toxins, killing off the brain.
Our aim is now to provide her with as much care and support to make her comfortable with the help of the pepper nurses!
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