LEA's STORY...
Lea Clarke is a very special little girl who has touched many people in her 6 years.
Born 18 September with her twin, Lea showed no real signs of her difficulties ahead. At 3 month’s old, Lea starting fitting and within 1 month was having 70 plus fits a day. At Addenbrookes hospital they run all kinds of tests, bloods, MRI’s, EEG’s and still no signs were found for Lea’s decline.
After 3 months, Lea was lost in her body, she could not smile or cry, she could not eat or drink and had to be tube fed, she would fit night and day, she had constant chest and lung infections, her digestive system failed, she was registered blind and spent a good 50% of her life in hospital.
At 2 years old, Lea had a 2 MRI which showed that her brain had shrunk to half the size, Lea still had 70 plus fits a day and the outlook was not good. Then can our ray of light, we read about a little girl, quite similar to Lea, who had been attending the Advance centre and who was making amazing progress. Naturally, we booked Lea in for a consultation.
WOW, within the first week, Lea was eating again, just pureed veg so her digestive system could cope but still…
After the first 3 months, Lea fitting had decreased, Within the first year, Lea was wearing glasses and was diagnosed with short sightedness.
We have been attending Advance now for 3 years, each time the therapy costs £600.00, this does not include travel and accommodation. Each time we go, Lea is assessed and exercises are made to suit her needs. We are then taught these exercises so that for the next 3 months, we give Lea 2 hours of therapy, 6 days a week. It is a large commitment, but one that we are dedicated to.
Lea now only fits at night ( and consultants hope with drug control to stop that!!!), she is now seeing the world quite clearly and each time she is checked by orthoptics, her glasses are changed due to her improving vision. She eats very well but still cannot mange lumps. Her digestive system is now and running fine so she enjoys a fab range of homemade meals.
Without Advance, Lea may not have been here as her decline was steady and certain. Doctors, consultants and all in the medical profession had run out of ideas, with no diagnosis, there could be no cure.
Lea is still disabled, we are under no illusions that she will jump up and start running around, but what we have always wanted for our strong beautiful Daughter is the opportunity to be the best that she can be, to reach the targets that she can and to have a happy life. We are proud of her regardless.
Thank you for wanting to help us, to help Lea in her life.
Jon and Jo Clarke.
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