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...
read this - october 26th 2007 - fund raising event in lingfield
In order to raise funds for Sacha's treatment there will be a special fund raising night at the Victoria Club in Lingfield which will include a raffle, an auction and a disco. To make a good eveing even better Chris Oxlade from Radio Mercury will be making a guest appearence. Read more...
In August of 2006 Sacha went to China to receive specialised stem cell treatment to help tackle Batten Disease. Her parents kept a detailed travelogue of the experience. read more...
"It was Sacha’s 6th birthday on Tuesday but we celebrated properly with a lovely birthday party at her school. Three other of the special children in her class had birthdays too so it was a joint celebration with games of pass the parcel and lots of chocolate and sponge cake! Sacha even had a slice of chocolate cake which was quite surprising because she always has her food pureed. She swallowed the pieces well and am sure she thought it was delicious." See Pics ...
"This brings me to the fact that we now have to consider adaptations to our home to make it easy to look after Sacha now and later on when her health is expected to deteriorate. If she becomes bedridden we have to look at special mattresses that discourage pressure sores. When she becomes too heavy to carry we may have to have a lift installed to move her between floors in the house." 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...
:: 2007 - Mobile Farm Visits Sachas School! See the pictures.
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!