When Tess Sullivan was born on 24th January 2007 she was perfect. The first child of Helen and Steve she was adored by everyone!
At 10 months her development suddenly stopped and she was not acquiring any new skills. She became very unhappy, clingy and unsettled. She would become hysterical for no apparent reason and could not tolerate any loud noises or busy atmospheres. At 2 years old it was discovered that she had Saggital Suture fusion – bones in her skull had fused together too soon and were putting pressure on her brain, causing tremendous pain. At just 2 years old she underwent surgery. Her bravery and ability to bounce back after this astounded family and doctors alike and at 2 1/2 she took her first steps with everyone believing her problems were behind her.
In September 2009 Tess began having severe epileptic fits and was having to spend days and days in hospital undergoing tests. One week before Christmas in 2009 Tess was diagnosed with Alexander’s disease- a degenerative disease with a life expectancy of 5-10 years. There are only 50 kids in the world with this disease.
This brave girl is a shining example of strength to everyone. Her family are determined to make Tess’ years the most enjoyable and fun they can, providing the whole family, including her two brothers, with as many happy memories as possible.
Many people have already started fundraising events and you can either donate or organise your own event to help Tess.
You can donate to the Sullivan family in aid of Tess through the Paypal account 73HFRARXZJ3TG in the name of Helen Sullivan and the email address firstname.lastname@example.org.