Hi, I’m Lisa, mum of 4 children, 3 of whom have special needs, 2 being SWANS and 1 having aspergers with sensory processing disorder. My youngest swan is our daughter, Amelia, who has an undiagnosed neuromuscular/neurogenic condition. She can run and jump one minute and not even sit up properly the next. She has a feeding tube for nutritional support and takes a raft of medications every day. She uses a wheelchair when fatigued and we do physio at home and at the hospital on a regular basis. Despite the ups and downs, she is hugely entertaining, determined and feisty.
When I joined SWAN UK over 3 years ago, I discovered a group of like-minded parents. Although our children’s issues can vary hugely, we all share the common bond of being undiagnosed and not knowing where we fit in. I love the camaraderie, sharing the highs and lows, the knock backs and achievements and knowing that day or night, someone will be around to offer support.