My niece Busy was born earlier than expected at 29 weeks in 2011. She was a happy, smiley and joyful child who loved life and enjoyed playing with her noisy toys, cuddling her mummy and grandma and laughing at the dog. 

She had a number of health difficulties that challenged her throughout her life and the doctors and nurses could not identify the cause of many of her conditions. Like 6000 other children born in the UK each year, Busy was a baby born with a Syndrome Without A Name (SWAN).

She battled with her health throughout her life and needed a lot of medical help and support. Despite her poor health and pain, Busy was a loving, cheerful and happy little girl who brought great joy to everyone who knew her with her cheeky smile. Sadly Busy passed away in December 2014, three days after my daughter was born. Ivy will get to know her cousin through our photos, videos and descriptions of our memories of her. 

I'm running the marathon as I would like to help raise funds and awareness for SWAN. My sister-in-law Georgia chose this charity as she wants other parents of children with SWANs to have support to help them. SWAN UK (Syndromes without a Name) is a project run by Genetic Alliance UK offering information and support to families of children with undiagnosed genetic conditions. They aim to develop a community of families for mutual support who can work together to raise awareness of the issues they face.

Life for families of children with undiagnosed genetic conditions is extremely isolating. Although their child may have significant learning and health needs, without a diagnosis they can struggle to access information and support. Without a diagnosis parents have no idea what the future may hold for their child or whether future children will also be affected. Georgia wishes that other families in similar positions can receive helpful support from this charity and they can do this with help from your donations.

Thanks for taking the time to visit my JustGiving page and read about my niece and for any donations you have made to this page. 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.