ORIGIN OF « HOPE4AT »
We draw the origin and energy of the creation of our association “Hope4AT” in our little daughter, 2 years and half, Lou.
She was diagnosed A-T (Ataxia Telangiectasia) in December 2017.
It is a rare and incurable (for the moment) degenerative genetic disease and life expectancy, according to statistics, is 20-25 years.
Everything started when Lou was a baby.. Lou has had stability problems since she was a little baby. This was already apparent around the age of 3 months when she was in our arms and that her head was falling backwards. Then, by the age of 8_9 months, when she was seated, she was always tilted backwards, which is still the case today. Lou started walking at 16 months. However, when she was walking, she was very unstable, like a drunk person, and her walk has not improved. She also fails to keep her balance when she is standing and motionless.
Before the diagnosis came, we consulted a lot of doctors (ENT, Pediatric Chiropodist, Ophthalmologist,…) thinking that his balance problem could come from the ears, feet, eyes ….
But in the end, none of this, it’s much more serious!
Despite this, Lou is a little girl who is always smiling, she loves to play, she is full of life and as many people are telling us, she is a real little doll.
In September 2018, she has started nursey school . We opted for a specialized school. Indeed, Lou needs specific care and attention such as kinesitherapy (4 times / week), speech therapy, or occupational therapy,…
On top of that, Lou must be regularly seen by the neuro-pediatrician and immunologist. These are, to date, the only “treatments” that can help Lou in his daily life.
