Andrew’s NF Story

Andrew’s NF Story

Andrew’s NF Story

As an infant Andrew suffered up to 30 seizures a day and was required to wear a helmet as the seizures would occur without warning. Doctors predicted Andrew would spend his life in a wheelchair and only live to the age of 20, but at 42 Andrew has exceeded his doctors’ expectations and has never needed to be confined to a wheelchair. He has since outgrown his seizures and continues to lead a normal, active and happy lifestyle. 

Andrew was diagnosed with NF1 at birth. His mother also had the condition but has not remained in Andrew’s life after he was fostered as six weeks old.

Since childhood, bullying has been a major challenge for Andrew. The lack of awareness and support of NF at the time did little to help.

“I had bad hand-eye coordination and strength so had trouble with activities such as hitting a golf ball, serving a tennis ball, kicking a ball,” says Andrew. “I have always felt like an outcast.”

Growing up with the physical limitations and symptoms of NF1, including neurofibromas on his face, Andrew fears he may never have the future he has always wanted.

“I fear that I will never marry,” says Andrew. “I have never had a partner, and I would like children but I know that there is a 50% chance that I will pass down my NF. I just need to meet more people with NF, or those who are sympathetic and understand what I have gone through in my life.”

Andrew has battled with low confidence and self-esteem as a result of his NF and bullying, but he continues to appreciate that he is one of the fortunate ones.

“I had a hard neurofibroma removed about four years ago, and I am about to see a plastic surgeon about removing a soft neurofibroma from the left side of my face, but I am fortunate I have not had to deal with any major medical setbacks,” says Andrew.

Despite his condition and challenges Andrew has also managed to live independently since the age of 18 and is committed to providing support and the reassurance that life doesn’t stop after an NF diagnosis.

“I hold a driver’s licence and am in permanent employment. Before I got my licence I used to get around town on a bicycle with no problems, and I also have a few friends I sometimes associate with,” says Andrew. “With the right support and understanding from family, friends and the community in general there is no reason anyone with NF can’t lead a normal life. There is definitely a lot more of this [support and understanding] today than 30 years ago.”

Andrew has recently connected with a number of people in his area who live with NF and has even gotten involved with various events to help raise funds and awareness, including Cupid’s Undie Run and the NF Sunshine Coast Awareness Walk.