Darling “Cerise” Cherry

Cherry is a darling three and half years old little girl. Little more than one year ago her parents learned that she has Vanishing White Matter Disease (VWM). VWM is a very rare disease, approximately 250 cases reported to date in the world. It is characterized by the troubles in walking and or stiffness of the lower limbs. The defective gene that is responsible for this disease is Eif2b. There is no cure or treatment for VWM.

Cherry was born in June 2013, and she has had a childhood quite normal up until 18 months . In April 2015, Cherry was very tired due to an accumulation of virus (urinary tract infections, ear infections, colds, etc…). In the days that follow, she falls of three steps down the stairs. And Approximately 5 days after….her parents find her motionless, the back folded and trembling in their garden. They took her to ER for tests and MRI showed something wrong with white matter but to confirm it the gene test was done. The results came back October 2, 2015 and it was confirmed that Cherry has Vanishing White Matter Disease (VWM).

Since a little over a year, Cherry has lost the ability to walk and until June 2016 she had no seizures. During these last few months, Cherry fell in a coma for a few days. Generally, patients with VWM if they fell in coma they do not come out. She was hospitalized at the neurological department of Calais. Indeed, Cherry not being transportable she could not be transferred to Paris. However, Cherry is a fighter, she comes out of the coma and she was transported to the service of Paris. Once in Paris, Cherry had her head to one side and her eyes were moving a little bit. “we didn’t think that the body could suffer so much”.

Today Cherry is much better. She attends school once a week, she must not catch of virus so that his illness is not evolving. So her parents are taking the necessary precautions. In order to save Cherry, the association “There’s your smile” has been created by her parents. They are in contact with the world, and organize a lot of events in order to help fund the research. They will send 100 % of what they harvest to researchers in Amsterdam, The Netherlands and Tel Aviv, Israel. Currently the researchers were able to implant the exact disease in mice. Now they’re doing some research on the gene and the gene mutation eif2b5 .

According to Delphine & Fabien, Cherry’s parents: through the association http://www.ilyatonsourire.com/ their goal is to raise awareness of the disease, to understand our struggle, our confusions. It is impossible to stand by and wait for death to come to the door. We know that it is possible to find a treatment for Cherry! She’s the one who gives us the strength and energy each day. Overnight we learned about this illness, so why not learn, if it is tomorrow, that treatment is found.
If you want to follow their fight on Facebook: https://www.facebook.com/IL-y-a-ton-sourire-690911507714751/?fref=ts

Written by: https://www.facebook.com/ZoomSurUneHistoireVotreHistoire/?hc_ref=PAGES_TIMELINE&fref=nf

Leukodystrophy Awareness

Raising Leukodystrophy Awareness while searching to find a cure for Vanishing White Matter Disease (VWM) -VWM is a rare genetic disorder that results from mutations in a gene known as EIF2B.

Find a Cure for VWM

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It is all about raising awareness for leukodystrophy called vanishing white matter disease (VWM) ~ while searching to find a cure...!

Leukodystrophy Awareness

Raising Leukodystrophy Awareness while searching to find a cure for Vanishing White Matter Disease (VWM) -VWM is a rare genetic disorder that results from mutations in a gene known as EIF2B.

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