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(La version française suit)
Éloïse was born on July 30, 2011, upon which she, and we, would spend the first 16 months of her life in the neo natal intensive care unit (NICU) at the Montreal Children’s Hospital. Éloïse has an extremely rare syndrome called “Coffin-Siris Syndrome” (CSS) which was diagnosed about a year after she was born.
The main manifestations of CSS are severe physical and mental developmental impairment. It is a syndrome that causes extreme bodily and mental handicaps restricting her ability to walk, talk, eat (she is tube fed), communicate and breathe properly on her own. In addition to the syndrome, Éloïse also has a severe scoliosis. This extreme curvature of her spine is restricting the development of her lungs and as a result, we anticipate spinal surgery in early 2015 to help improve her quality of life so that her lungs can develop and so that, one day, she may breathe on her own without oxygen during the day and without assisted ventilation at night.
At the time of the diagnosis, less than 200 cases existed worldwide.Due to a breakthrough in genetics in 2012, new cases are being diagnosed each month and the approximate known cases worldwide are now closer to 400. CSS is caused by a De Novo genetic mutation (extremely rare and random), that neither parent possesses nor transmits. As far as we know, Éloïse is the only child in Quebec with this syndrome.
To this end, we are reaching out for financial support towards the purchase of an adapted handicap van equipped with a wheelchair ramp. Mobility and transportation with Éloïse is already severely compromised and after her spinal surgery, it will be even more so.
Thank you for taking the time to learn about our special daughter.
Graham, Geneviève & Éloïse
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Nous sommes extrêmement reconnaissants envers tous ceux qui nous ont aidés à amasser la somme de 25 000$. Toutes les contributions additionnelles seront acceptées et les bienvenues. Elles seront utilisées pour l'achat total du véhicule adapté aux besoins d'Éloïse et pour les autres dépenses reliées à ses besoins médicaux.
Éloïse est née le 30 Juillet 2011 et elle a passé les 16 premiers mois de sa vie dans l'unité de soins intensifs néonatals (USIN), à L'Hôpital de Montréal pour enfants. Un an après sa naissance, Éloïse a été diagnostiquée avec un syndrome extrêmement rare: le syndrome de Coffin-Siris (CSS).
Le CSS se manifeste principalement par de sévères anomalies au niveau du développement physique et mental. En bref, le syndrome provoque d’extrêmes handicaps physiques et mentaux, limitant sa capacité de marcher, de parler, de manger, de communiquer et de respirer. En plus d'être atteinte de ce syndrome, Éloïse souffre d’une scoliose sévère. Cette courbure extrême de la colonne vertébrale limite, entre autres, le développement de ses poumons.
Par conséquent, nous attendons en 2015 une chirurgie au niveau de sa colonne, ce qui aidera à améliorer sa qualité de vie, permettant à ses poumons de se développer afin qu'elle puisse un jour respirer sans oxygène, ni ventilation assistée pendant la nuit.
Au moment de son diagnostic en 2012, moins de 200 cas existaient au monde entier. Grâce à une percée en génétique en 2012, plusieurs nouveaux cas ont été diagnostiqués et le nombre de cas connus à travers le monde se rapproche maintenant de 400. Le CSS est causé par une mutation génétique "De novo", rare, et non-héréditaire. À notre connaissance, Éloïse est la seule enfant au Québec ayant ce syndrome.
À cette fin, nous tendons la main pour le soutien à l'achat d'une fourgonnette adaptée aux handicapés, possédant une rampe pour fauteuil roulant. La mobilité avec Éloïse est déjà compromise et, suite à la chirurgie, elle le sera encore plus. Il nous sera alors absolument nécessaire d’avoir une camionnette adaptée, afin de pouvoir la transporter.
Merci d'avoir pris connaissance de notre histoire et de notre fille spéciale.
Graham, Geneviève & Éloïse
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