Sacha in the media
Sacha's plight has been widely reported in the press. Here are some of the reports.
Brave girl's flight of hope to China Newsquest Media Group Newspapers 19 July 2006
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.
The disease affects one-in-30,000 children born in the UK and there is no cure. Without treatment Sacha, who was diagnosed with the disease last July, is not expected to live beyond the age of 12. While researching the disease on the internet Sacha's mother, Annette Dacosta, made contact with a Swedish woman whose son has already had stem cell treatment in China.
She visited her earlier this month and was heartened by the progress the boy had made. Ms Dacosta, 37, said: "This is the first time I have heard of a child showing signs of improvement anywhere in the world. They are not huge changes but all his nurses and his mother have noticed a definite improvement which is very exciting and encouraging."
Ms Dacosta will fly out with Sacha on August 12, and will return to the UK a fortnight later when Sacha's father, Neil Skinner, arrives.
Blood stem cells, which have been taken from umbilical cords with the consent of new mothers, will be injected into Sacha's spinal column and will work their way through the blood stream to the brain, where it is hoped they will start to repair the damage done by Batten Disease.
Sacha may have to travel back to China for more treatment if it proves successful. She was accepted for brain surgery in America but was unable to have the operation after her seizures became worse.
Her condition has gradually deteriorated and last month she had a tube fitted to her stomach to allow her mum to give her fluids and medicine. Earlier this year Sacha was recognised for her courage in The Argus Achievement Awards.
Ms Dacosta said: "Sacha is still taking food orally but only just. Her swallowing mechanism is going and we have to puree everything. "I am feeling really positive about the treatment. I don't feel nervous at the moment but I might do on the plane over there.
"Sacha isn't going to have brain surgery which I was worried about and this isn't as invasive."I'm looking forward to the future whereas before I just didn't think we had any hope." The treatment is being funded by Hove businessman Chris Weatherstone who donated £10,000 to Sacha's family after reading of her plight in The Argus. Ms Dacosta said: "We are so grateful to Chris. Without him none of this would be possible."
A five-year-old girl from Sussex has started receiving stem cell therapy in a remote hospital in China in an attempt to halt a degenerative disease. BBC 28th August 2006
Sacha Skinner, from Brighton, suffers from Batten's Disease - a rare disorder inherited through her genes - which affects her speech and movement. Her family raised £20,000 for the trip as the treatment is illegal in the UK. BBC 28th August 2006
Brave Sacha Skinner has been undergoing pioneering stem cell treatment at a hospital in China. Brave Sacha's fight for hope - By Lynn Eccles, The Argus - 4th September 2006
Five-year-old Sacha, who suffers from Batten Disease, an incurable degenerative brain disorder which affects her ability to speak, eat, and walk, has been having regular injections of stem cells harvested from the umbilical cord.It is a procedure that is illegal in the UK.
As well as the weekly stem cell jabs Sacha is also having injections of nerve growth factor to stimulate stem cell growth, acupuncture and physiotherapy.In her second week at 463 Hospital Sacha has had a mixed week as the treatments start to take their toll.She was cared for by her mum Annette Dacosta and stepdad Graham Pearson for the first two weeks of her treatment. They have now returned to the UK and Sacha's dad Neil Skinner and his partner Rebecca have flown to China to care for her.
Mrs Dacosta, of Firle Road, Brighton, said: "I didn't come here looking for miracles or immediate results.
"I came to try and give Sacha the best quality of life that I can. I have been in contact with many people all over the world and no one has had a bad word to say about the results they gained after stem cell treatment.
"Some people have been able to move in much better, pain-free ways, some have learned to walk again after injury or illness. I don't know what will happen with Sacha."This week Sacha has been given 2.5ml of stem cells, compared to the 1.5ml she had in her first injection.
Following the injection Sacha was also given umbilical fluid and nerve growth factor to stimulate the stem cells. Mrs Dacosta said: "This time last year I didn't have a clue what nerve growth factor was, I simply thought there was no hope for my daughter's survival. This is what China has afforded us - hope - and there's no price you can put on that."
The doctors believe this week they will be able to inject the stem cells directly into Sacha's brain.
Sacha has been a bit poorly over the past week, which caused some concern to Mrs Dacosta, Mr Pearson and the doctors at 463 Hospital where she is being treated.Sacha had been shaky, pale and in pain but doctors were relieved when they realised the cause of her sickness was simply a reaction to Chinese milk.The family also faced a barrage of reporters and photographers at the hospital.
Mrs Dacosta said: "I wasn't prepared for so many large cameras being aimed at Sacha and lots of people calling her name all at the same time."She added: "I'm really keen for Sacha's story to get maximum exposure so it will raise awareness of Batten Disease around the world and maybe encourage investment in its treatment.
Brave Sacha's fight for hope - By Lynn Eccles, The Argus - 4th September 2006
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!