The family of terminally-ill toddler Tess Sullivan has said a big New Year’s thank you to Observer readers after the campaign to help her topped the £10,000 mark.



Tess, three, is one of 50 infants in the world to have Alexander disease, a degenerative disorder affecting the central nervous system.


The campaign was launched to give her and her family as many magical moments as possible.



Since it first appeared in the Observer, Tess has enjoyed a new lease of life - with trips to Euro Disney, Lapland and the ongoing creation of a visually stimulating bedroom to help the toddler as her eyesight deteriorates.



Because of the severity of her incurable condition her mum Helen is unclear how many Christmases and New Years her Huncoat-based family will have with Tess.



But since the initiative to create magical times for Tess and her family went public in August almost £11,000 has been raised by devoted residents.



Helen, a 31-year-old teacher, is determined to focus on the positives and says her daughter’s tale has reaffirmed how good people are.



Helen who lives with husband Steve, Tess and her brothers Tyler, 12, and Max, one, said: “It’s beyond our wildest expectations what’s happened. If I think back to this time last year, it was around the time that we found out Tess’s diagnosis.



“At the time we were falling apart inside. We didn’t know what the future held at all and everything seemed so negative.



“But what’s happened this year has brought a lot of positives. It’s reaffirmed how good people are.



“I have a wonderful family and we have brilliant friends but so many people have come into our lives and have been genuinely touched by Tess.



“To know that so many people care about Tess is important - it keeps us going.”



Following her diagnosis Brave Tess underwent surgery to remove parts of her skull after being diagnosed with pressure to the brain.



Next month she is expected to up her classroom attendance at White Ash School in Oswaldtwistle to four days a week.  



It is there that her physiotherapy, occupational and speech therapy actually take place. But her mum Helen takes Tess to a paediatrician a minimum of once every three months.



Tess also regularly visits a neurologist, who is an expert on Alexander disease, a geneticist and a neurosurgeon, who checks on her skull and that pressure on her brain is still being released.



Thanks to Oxford United fans, who took an interest in Tess after reading about her story, £4,000 has been raised.



Countless donations have come from individuals in Accrington and Rossendale and from further afield, while numerous fundraising initiatives have helped the campaign progress financially.



Helen said: “We can’t convey how grateful we are to anyone who has helped to keep us going. We feel very fortunate. We have had the opportunities to do things we never thought we would be able to do.



“Seeing Tess and the family together this Christmas makes us savour every moment. You wouldn’t be human if you didn’t wonder how many Christmases, birthdays we are going to have – or how many Christmas plays we’ll see her in. At times the negative thoughts creep in but that’s when it is special to have the positives.”



She added: “I remind myself that so many positives have come out of it during the hard times. it’s only a year ago since we found out about Tess’s future.



“As a parent all you want, whether your child is not well or well, is to give your child the best experience and the best life you can. Obviously we have been fortunate.



“We want to thank our family and friends, the community, my school, the Oxford United and Accrington Stanley fans and every single person who’s made any kind of contribution. It makes a huge difference to our daily lives.”



Next year the Sullivans are hoping to hold a birthday party for Tess on January 24, enjoy a trip to Center Parcs in May and expect to finish building her bedroom.



You can donate to Tess through the Paypal account 73HFRARXZJ3TG in the name of Helen Sullivan and the email address helensullivan@hotmail.co.uk.



You can also donate by making cheques payable to Helen Sullivan C/O St Peter’s Primary School, St Peter’s Road, Newchurch, Rossendale, Lancashire. For more information on Tess’s story, please see the ‘Help Tess Sullivan’ group on facebook.