About us

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.

MEMBERS OF « HOPE4AT »

The diagnosis of our daughter came in December 2017, it took us time to ``recover`` from this horrible news. At the beginning, we were only crying, we are annihilated,...
But we had to quickly get back, for Lou, but also for her sister Emy, we had no choice, we must move forward.
The worst thing that can happen is to know that your child is sick, but that there is no treatment and you cannot anything to help her. This terrible helplessness!
The disease is little known, there are not many associations and aids related to this disease in the world and none in Belgium.So, this is why we took the initiative to create this association.
Our association is composed of 3 people.

Administrator

Solange Gallo

I’m Lou’s mother. Today my priority is my family life, the well-being of my daughters. By creating this foundation, our goals are to advance research (via the collection of donations) and help families who find themselves overnight in the same situation. But also bring the best life for Lou, whatever her life expectancy is… we hope the longest possible.

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Administrator

Virginie Laebens

I am a close friend of Lou’s parents and of course what happens to them affects me a lot. We always think that this only happens to others… When they decided to create the association “Hope4AT”, they asked me to join and of course, I accepted without any hesitation. We feel so helpless in this situation, that it is my duty to support them the best I can. Lou is a smiling little girl full of life. For her and for all other people with this damn disease we will fight. Our fight will be long and not without obstacles, but together we are stronger!

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Administrator

Kevin Wilms

I’m Lou’s father. Despite the difficulties, I’am, and I will remain determined like the other members to give all my strength in this fight. Lou’s disease is not wellknown since it is rare disease. We want, together, make things happen to make to raise awarness of A-T. We do not lose hope because medical research has evolved very quickly lately and will continue to evolve a lot in the coming years.

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Didier Sadi

I know the parents of Lou since almost 20 years. They are more than friends, they are part of my family and Lou is like a cousin for my son who is the same age. I’ve always been there for them and I will continue to be there even more than before ! It’s not their fight, it’s our fight! I will do everything to help them and collect as many donations as possible to advance medical research as quickly as possible!

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