Our beautiful daughter Céline was eight months old when she started to have noticeable seizures. On her first birthday, we received the news that she had tuberous sclerosis. Like everyone who has a child with special needs, or a sick child, our family life changed drastically, as we were doing what we could to give our daughter the best quality of life possible. Anxiety, questions, worries were from then onwards, our daily, routine life. Very quickly, though, Céline emerged as a true fighter. She had a wonderful smile, and an unbounded enthusiasm for life. All she ever wanted was to have a normal life.
As a family, we just had to adapt. At the age of three, she was on skis, determined to learn the sport, and she went on to enjoy competent, intermediate level skiing for the rest of her life. At the age of four, she was swimming like a fish, and she loved nothing more than going crabbing on the long beaches of Brittany.
Then David Attenborough’s Blue Planet series came out, and Céline never missed a single episode. Sir David became her life hero, to the extent that her younger brother Edouard and his friends nicknamed her “Dave”.
At the age of nine, Céline had brain surgery at Great Ormond Street Hospital to remove as many of the lesions as they could, and the results were extremely positive. As a family, we started to holiday-travel far away, and everything was geared towards nature…Vietnam, Cambodia, Thailand, Kenya, Sri Lanka. Within a few years, amazingly, Céline started to travel alone, joining volunteering projects in Costa Rica, Zambia, and South Africa. Nothing stopped her. But it was never easy because of sleep deprivation, medication and so on. We had to draw the line at Madagascar (“Please can I go to see the lemurs?”) and say, sorry…it’s just too remote.
Her wonderful consultant at Great Ormond St, the late Professor Brian Neville, had to convince her that she really could not go scuba-diving, and so she joined a shark hunting expedition trip in South Africa, where she helped the divers to prepare. Our last family trip together was an unforgettable week in the Galapagos Islands; her absolute dream come true.
Céline took a lot, but she gave back so much more. With her smile, her humour and her bouncy and positive personality through all her ups and downs, she was always popular with both our friends and hers.
Like many girls of her age, Céline was very interested in fashion and make-up, and at the same time, she was a very promising young painter, who loved her art. We cherish her paintings, normally of animals, journeys in the jungle, and snow scenes.
One early morning in her hall of residence far away in Berkeley, CA, where she lived while studying in San Fransisco, Céline passed away, having suffered an acute nocturnal seizure.
Céline was bilingual French-English, and although she had a very troubled first nine years of life, during the following sixteen years, she packed in more than many people do in a normal life span, She is with us at all times, laughing, travelling, enjoying life, and bringing happiness and joy to everyone and everything around her. This was Céline.
As proud parents of such a girl, who was able to benefit so much from the developments of research science, we are very happy to have been involved with support for the ERUK Céline Newman Prize for Epilepsy Research.
– Paul & Fanette Newman, 2018