20 March 2009

Tragic Dundee Twins Die on Same Day

Saul and Savannah-Rose pictured with mum, dad and Santa at a party at Rachel House last Christmas.

Inspirational twins from Dundee who together fought a terminal disease have died alongside one another (writes Graham Huband).

Seven year olds, Saul and Savannah-Rose Fraser, both passed away on Tuesday at Sick Children's Hospital in Edinburgh after finally succumbing to Infantile Batten Disease, an incurable genetic disorder.

The tragedy comes at a time the family should have been celebrating following the recent arrival of Zak, a new brother for the twins.

Saul and Savannah-Rose were born on November 15, 2001, but parents Mark Fraser and Alana Addison only became aware of problems at Saul's nine-month screening when it was discovered his development was impaired.

His sister Savannah-Rose appeared to have no such difficulties but became ill at the age of 22 months and was diagnosed with Infantile Batten Disease. Just two weeks later, medics confirmed Saul was also suffering from the disorder.

The inherited condition affects the nerve cells in the brain and other parts of the body and is characterised by the progressive loss of physical and mental skills.

Medical evidence suggests each newborn has a one-in-four chance of developing the disease but it actually affects around one in every 200,000 children born in Britain .

The Evening Telegraph were unable to contact the family for comment today.

Rachel House Children's Hospital, where the twins were regularly cared for and where they enjoyed a Christmas party last December, declined to comment.

A joint funeral service will be held at Chalmers Ardler Parish Church in Dundee next Thursday before the twins are laid to rest at Barnhill Cemetery.

Mourners are being asked to wear bright colours to the service and donations made at the church will go to Rachel House.

News of Saul and Savannah-Rose's plight touched the hearts of Dundonians when their story first made the headlines five years ago.

Mark and Alana set up a trust fund in the twins' name and numerous events were held to raise funds for the purchase of medical equipment and the ongoing costs associated with caring for the children.

The search for treatment for the twins saw them travel to America in 2004 where they took part in drug trials.

In April 2004, Alana and Mark told of their fears about Batten's and their determination to do whatever it took to help the twins fight the disease.

At the time, Mark said, "The defective gene has probably been in each of our families for generations but has never effected anyone before because only one parent has it.

"When two people come together, like Alana and I, that is when, if the defective genes are passed on to the children, they will develop Batten's.

"We did not know we had these genes until the children were diagnosed", Alana added, "We returned from our first trip to America four weeks ago after they underwent similar scans and tests as they had here but more advanced.

"They have been given a drug called Cystagon and we take them back in six months for the doctors to monitor how the drug has taken effect."

At the time, the twins were the only children in Dundee to be diagnosed with the condition and only seven other cases were known of in Scotland .