Published Tuesday, 02 October 2012
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Jessica Philpott has Apert Syndrome, a condition which causes bones in her hands, feet and head to fuse together.
The three-year-old has complex problems, meaning she needs special medical care and has already undergone over 20 operations.
But her father said Jessica deals with them with a bravery beyond her years.
"I have to be honest she is just so courageous," said Lawrence Philpott.
"She just takes everything head on I think she deals with some things better than us actually and that's the truth."
When we were told it took a long time to sink in and from that point we did realise the complex nature of the condition and those were difficult days.
Forty visits to Great Ormond Street hospital in London mean Jessica has spent much of her life either in hospital or recovering from surgery.
The most recent operations have created four fingers and a thumb on each of Jessica's hands, and her progress continues to amaze her family.
"As her mum I'm so proud of her I'm so proud to say that she's mine and I'm blessed to have her," said Julie Philpott.
"She's a special little girl and the first time I saw here the nurse was explaining to me that Jessica had all these problems but to me she was perfect and she still is."
Apert Syndrome affects only a small number of people in Northern Ireland.
Jessica faces more surgery at the start of next year, but her parents want her story to give hope to other families facing similar struggles.
"As parents what we want to do is develop the strength of character in Jessica that she needs to cope with this condition and that she needs to cope with life," continued her mother.
"Society has come a long way in accepting people with differences in disabilities but it still has a long way to go."