News of the Gulf of Saint Tropez deal also with solidarity shown by many people around families in need. We also want to share this solidarity by taking the example of the Association « Je cours pour Lilian » (« I Run for Lilian »).
The Non-Profit Association « Je cours pour Lilian » (I Run for Lilian) was created in November 2013 by people close to Lilian, in the town of Cogolin, France, near Saint Tropez.
Lilian is a little smiling boy with mischievous sparkling eyes. He just wants to enjoy life and be able to run and play with his friends and cousins.
He was born May 24, 2012 with a complete bilateral cleft lip and palate, severe plagiocephaly and congenital legs folded on his stomach torticollis.
Thereafter, he was diagnosed with, in addition, central sleep apnea and an overly narrow occipitocervical junction with risk of compression of the spinal cord.
Since his birth his parents struggle to give him the best care but everything has a price. As time passes, the risk of psychomotor delay for Lilian increase.
Lilian’s mother and two of her friends are fans of running. Pushed by people around them they decided to create the Association to try to take care of (at least part of) Lilian’s medical expenses.
The name of the Association was created according to the following idea : « Instead of running for us, why not run for Lilian ? »
Above all, Association’s will is to do everything they can for Lilian so he can RUN one day.
The Association is committed since November 2013 to help Lilian’s family and give a long-term help to other children with same diseases.
Today, there are many structures to separately deal with various Lilian’s diseases but very few structures deal with all diseases at the same time and unfortunately they do not have the right answers for Lilian and other children with same diseases.
The whole small village of Cogolin in France has mobilized for Lilian and some surrounding communities did so (Port Grimaud, Grimaud, Gassin, la Môle and many other towns), but now the Association needs your help so Lilian’s disease can be known worldwide and globally shared with other countries.
The Association needs to raise as soon as possible about $ 15.065 to allow Lilian to follow emergency care in Barcelona, the only European center adapted to this kind of disease. This neuro-rehabilitation program in Barcelona is called « Essentis Program ».
You can visit Essentis official webpage to understand the kind of care children like Lilian are following in this center (see http://www.metodoessentis.com/info.php?sec=142&idioma=en) but you have to know that, during the sessions, the patient goes through various workshops in which posture, disability and symptoms are evaluated by different members of Essentis’ team (osteopaths, acupuncturists, Physiotherapists …) to develop a personalized program adapted to children’s needs.
Different therapists work in coordination within the center and the team of Dr. Nazarov (myiotenofaciectomie), that of Dr. Lao (geneticist) and Dr. Cori Lopez (neurologist), Windoor (Empuriabrava), which enables a rapid response to the needs of daily patient.
The Essentis patient approach is holistic, meaning it is considered in its entirety.
Essentis is the only program that is known which is able to treat all the symptoms of the disease at the same time.
The Association would also need SPLINTS, SPECIAL SHOES, and a GATEADOR, a support allowing children with this disease to walk with 4 legs almost alone.
Boutemy Real Estate supports « Je cours pour Lilian » Association and has recently invested to launch an international crowdfunding campaign via the world famous US website « Indiegogo ».
You want to support this initiative by making a donation ? Simply go to the Indiegogo page by clicking on the following link, and drop the amount you want or simply make a comment of support (which will help ensure that the campaign could remain well ranked among 7000 other ongoing campaigns on the website) : https://www.indiegogo.com/projects/i-run-for-lilian/x/8601164
If you are a journalist : an article or a news story in your media support about this campaign would be most welcome.
We hope this campaign will meet with a success in order to achieve the target set for Lilian and Association. If the expected amount is exceeded, other children may be able to benefit from similar treatment.
See you soon,
The Boutemy Real Estate Team.