Mathéo and his little brother Robin are both affected by the same mutations of the WWOX gene and suffer from WOREE syndrome.
Mathéo was born on 15 October 2008 and was a gorgeous 4.5-kilogram baby who was admired by all the nurses! He was very lively and wriggling around since day one with eyes wide open and alert to the world.
Everything dramatically changed about 2 months later when he convulsed for the first time. A really complicated year followed with medical staff challenged by his condition. However, after this year the epilepsy stabilised and we finally began to live again.
Despite Mathéo’s illness, we decided to have a second child with assurances from the doctors that there is zero risk of having another child suffering from the same illness. Unfortunately, the doctors were wrong with their genetic diagnosis…
Robin arrived on 19 of June 2011. A little baby, very different from Mathéo. He was very quiet and had some hypotonia. However, this was not completely out of the ordinary for a little baby born 3 weeks premature.
Despite the doctors trying to persuade us that everything was normal, Robin started displaying all the same symptoms as his brother. Our only hope was that he will benefit from all the experience we gained while caring for his older brother Mathéo.
I will save you from all our dark thoughts and the many tears which had shed and continue to shed by telling you a bit more about our daily experiences with our two boys and their fight against WOREE Syndrome.
Mathéo and Robin have daily seizures despite a regimen of strong anticonvulsants. However, they can have bursts of laughter after a seizure and look amazed with the world. It is almost as if they are saying “Hey Guys, everybody is here, this is so great!”
Both boys had deglutition troubles which led to an operation for gastrostomy in order to give them all their liquid nutrition. Despite this, our little gourmets love yogurts, compotes, calf's liver and mustard mackerels.
Mathéo and Robin are totally dependent on us for all their daily movements but are tickles champions and fond of " la petite bête qui monte qui monte qui monte!" They suffer from extreme hypotonia which leads to distortions and pain. They also have scoliosis and hip luxation. We counter all of this with extreme cuddling and Mathéo and Robin are always open to us with their presence and gentleness.
Our boys are developmentally delayed but give us winks, little smiles and are real little devils when it's not dad and mum giving them their meals!
Daily use of specialized equipment is required: "seat-corsets", vertical hoisting equipment, medical bed and moulded mattresses. Handyman daddy invented a "ski-trolley” to take us to the summit of the mountains around us!
Mathéo and Robin share our love for nature and mountains and their senses awake when we go for a walk with them. With them, everything is stronger, sadness like happiness, and they teach us how to live life at 100%.