Hi, I'm Claire and I'm a single parent of 4 children between the ages of 13 and 6. We live in Northampton, in the East Midlands. My 3 younger children are all undiagnosed. They have a host of medical issues, from coeliac disease, to gut dysmotility, food allergies to anxiety, a heart murmur, to growth disorders, hypermobility to chronic pain, hypoglycaemia, to reflex anoxic seizures, and hypothyroidism to good old fashioned reflux and a few learning difficulties thrown in for good measure, amongst others. My youngest son is currently the most complex of the 3, involving a regime of Total Parenteral Nutrition (Intravenous feeds) and enteral (tube) feeds.
I have spent many years trudging my way through, alone, afraid, and isolated, trying to add myself to support groups, but never quite feeling like I fitted in, with everything a battle. Then I found SWAN UK and my life became less alone, I was a part of something, and I felt like I fitted. I am really excited to get started on this journey, and bringing SWAN UK to Northamptonshire!
Hi, I'm Aimee, I live in Warwickshire with my husband Ollie and our three children, Freddie our Swan who is five, Bella, three and Jago, one plus our Jack Russell, Teddington.
Freddie's neuro-developmental problems were first picked up at my 20 week scan during pregnancy. Freddie is delayed in all areas of development, he also has low muscle tone, severe speech and communication difficulties including developmental verbal dyspraxia and an eye condition called Hypoplastic Optic Disc. Although at times his behaviour can be a challenge, mainly down to frustration, Freddie is a very funny, cheeky, loving and happy little boy. We all adore him and he loves his little brother and sister.
Freddie was recently diagnosed via the DDD study - one single gene, found only in him, is faulty. TUBA1A. There are only a handful of other children known to have this diagnosis so it is still extremely rare and we remain where we are happy, with SWAN UK.