On Monday 16th May 2016 my brother Michael and his girlfriend Hayley gave birth to the beautiful Amber Ivy Mills. On her 6 week check she was admitted to hospital after the doctor was concerned about her floppy head, arms, legs, and particularly her breathing. 

After a long week in hospital and all tests exhausted, Amber was diagnosed with SMA Type 1, a life limiting condition. After the diagnosis, despite her condition, Amber continued to light up the world of everyone around her. She fought for as long as she could, but on 16th September 2016, her family were devastated as she lost her battle, closed her eyes, and went to be with the angels.

Two years on and this little girl continues to shine bright in the hearts of those who loved her. Amber, her family and her friends have inspired so much kindness and generosity (#teamamber) in support of The SMA Trust / SMA Support UK.

In this spirit, I am running the Wolf Run in November for SMA Support UK. It's a truly brutal 10k wild running experience - think obstacles, lakes and mud. I would be really grateful if you could donate what you can to this great cause. 

This condition is truly devastating for anyone who is touched by it, and the charity works tirelessly to ensure that families have the advice, service, information and community they need to support them. They also fund and facilitate research in to the condition to help SMA Sufferers. They were an amazing support to Hayley and Michael and the rest of their family, and I hope the money raised will ensure another family receive the same support.

SMA is a rare inherited neuromuscular condition which affects nerve cells involved in walking, crawling, arm, hand, head and neck movement, breathing and swallowing. Of the three most common childhood types, SMA Type 1 is the most severe with children rarely surviving their second birthday.

In the UK approximately 1 in 40-60 people is a carrier of the gene, and approximately 100 children are born with this rare disease each year. At any one time it is thought that there are between some 1200 - 2500 children and adults in the UK living with SMA.

Thanks for taking the time to visit my JustGiving 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.