A FAMILY from Chepstow has paid tribute to “a special, beautiful and unique” girl who died this month from a rare genetic disorder.

Georgia Lewis, 16, died on February 19 after a long battle with Sanfilippo disorder – an extremely rare terminal genetic disease causing progressive neurological decline.

She was diagnosed with the disease at five years old, and over the years she lost many of her physical skills, including her ability to talk, walk and feed herself.

She required round-the-clock care, which her parents, Louise and John, provided for her at the family home in Bulwark right up until the last few months of her life.

Mrs Lewis said: “We were able to care for Georgia at home with help from the community nursing team and social services. Up until December 2010, Georgia attended school every day at the Heart of the Forest Special Community School, which she loved.

She thrived on the social interaction and many activities the school provided for her.

“Over the past fewmonths, her health deteriorated and she was taken to stay at Ty Hafan children’s hospice, where she was able to receive specialist nursing care. I was able to stay with her, too and the staff where fantastic.

“Weare very grateful to all the staff at Georgia’s school and the hospice for the support they gave us, and our friends, too. Despite everything that Georgia endured during her short life, she was an incredibly happy young girl.

“We strived to ensure she had the best quality of life that we could possibly provide for her. She was very special, beautiful and unique in every sense. We will miss her so much.”

Georgia’s funeral will be held on March 5 at St Mary’s Church in Chepstow at noon. Family flowers only, donations for the Heart of the Forest Special Community School via Philip Blatchly, funeral directors.