Cockayne Syndrome is defined as progressive – meaning as time passes, symptoms and ailments worsen, eventually leading to death. For all the children I have watched grow and then decline, the effects of this is always different. In some/majority of cases you see a very obvious decline with weight loss, hair loss, hearing and sight deteriorating – and then in some, they just drift of too sleep without so much as a whisper.
Terri from a young age continued to prove Doctors and Medical Professionals wrong, improving rather than declining. Over the past few years her body has slowed down and the syndrome is sadly catching up with her (don’t get me wrong she was always poorly, but it is becoming more obvious to us now). To many of my friends and those who spend time with Terri, she will look no different than she ever has done – but to us, we are starting to see the small changes. Her face becoming slimmer, her eyes looking deeper, her hair thinning and falling out.
It’s horrible – we don’t want to lose her, but in a weird way it’s like we’re waiting, expecting it every time something big happens or changes. Her life expectancy at diagnosis was 12 years, so you can imagine the mood on her 12th birthday (and every birthday that followed). To show the physical changes – below I’m going to put some photos of Terri at different stages in her life – from baby to the big baby she is now.
You can tell by the photos when she dipped in and out of health. At one point in her life she was so thin that you could feel and see her spine, Terri didn't feel the need to eat, even when we tried to force her. She improved slowly after the feeding tube and her chubby cheeks returned. If she hadn't been given the gastronomy tube I have no doubt that she wouldn't be here with us now.
It is hard to admit that she is deteriorating, but ignoring it would be more painful in the long run.
She might be declining, but my love for her grows more and more every single day.
My Best Friend & Soul Mate - Terri Nicola.
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