The story of sacha and her battle with batten disease!
My name is Annette Dacosta and I am mother to Chloe (15 and healthy) and Sacha (left) who is 6 and was diagnosed with Late Infantile Batten Disease on 10th August 2005 after 2 1/2 years of major seizures and cognitive and physical deterioration.
Sacha was born at the Royal Sussex County Hospital in Brighton, UK at 5.40 a.m. on Tuesday 19th September 2000. We had a forceps delivery after an 8 hour labour (I'm not that good at pushing!!). Sacha weighed 7lb 4ozs and was perfect in every way. Just like every parent expects their child to be. For the first three years and three months of her life Sacha developed at the same rate as any other three year old. She could walk, sing, speak, count, jump, splash in the bath, go to mainstream nursery, hug, laugh, drink from a bottle or a cup, feed herself and was almost fully potty trained.
All of that changed after one night in December 2003 when Sacha woke up having a convulsion. More...
2009 - news update...
It's been 18 months now since Sacha returned from her third and last trip to China for what was her last stem cell treatment. During this period we have seen, what is for us, the greatest period of deterioration in Sacha. I think that when we were first investigating going down the stem cell route there was such incredible hope that kept us afloat. Read more..
Many people have helped Sacha over the years and we would like to say a big thank you to all of you. See the thank you list
"A five-year-old girl with a rare disease is to have pioneering stem cell surgery in China. Sacha Skinner, of Firle Road, Brighton, will have ten million stem cells injected into her spinal column once a week during her month-long stay in Shenyang, northern China. Her family hopes the experimental treatment could reverse the effects of Batten Disease, which affects the nervous system and has left her unable to walk or talk without help. " Read more...
"In January this year, we noticed that Sacha seemed to be having some respiratory issues - nothing serious but not quite right nonetheless. Today, our community nurse demonstrated the use of a suction machine which we have ready if we feel it necessary. Sacha has been coughing quite violently recently and finds it hards to bring up the phlegm lying on her chest so at least we can now give her a helping hand." Read more...
:: A huge thank you to Gemma Firth who ran the marathon for Sacha a couple of months ago. Gemma did extremely well and ran the distance in an astonishing 4:03:28 - way ahead of Gordon Ramsay!! Gemma has raised over £1,300 with donations still coming in. Read more...
About batten disease...
Batten disease is named after the British pediatrician Frederick Batten who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Although Batten disease is usually regarded as the juvenile form of NCL, some physicians use the term Batten disease to describe all forms of NCL. Read more at Wikipedia, the free encyclopedia...and UCL Institute of Child Health
So many people have offered time and energy to support Sacha we have made a 'big' thank you page. Do tell us if we have missed you off the list!