St Albans ‘onesie’ walk for charity
PUBLISHED: 12:37 29 August 2014
A brave St Albans woman fighting an extremely rare blood disorder which has robbed her of most of her sight is holding a charity walk to raise money for research.
Because of the potentially life-threatening condition that Sue Browning suffers, she has undergone over 500 transfusions and has needed a full-time carer since being on life support for four months in 2010.
Friends of the 34 year old, including former classmates who also attended Townsend School, have rallied behind her who has organised a “Onesie Walk” through the city on Saturday, September 13.
Sue’s blood disorder is called Diamond Blackfan Anaemia (DBA) which is so rare that there are only about 125 known cases in the UK, and around 1,100 worldwide.
DBA is caused by a failure within the bone marrow. It is characterised by an inability to produce red blood cells – without these cells we cannot survive as they transport oxygen around the body.
Regular blood transfusions provide vital red blood cells but also lead to too much iron in the body, which can be fatal.
As people with DBA do not make any new blood cells, the iron builds up and stores in major organs.
Sue’s iron levels are about 25 times higher than normal.
Sufferers require lifelong medical care, including steroid treatment or monthly blood transfusions.
Sue’s mum Lynn Jones said that she was admitted to Westminster Children’s Hospital at the age of six weeks, and stayed there until she was nearly one year old.
Because Sue has suffered severe iron overload, she is nearly blind, has lost all of her hair and teeth, and has mobility and chronic immune system problems.
Sue’s spleen had to be taken out in 2010 while she was on life support with septicaemia and pneumonia.
Lynn said: “Now for my Sue, we concentrate on quality of life, not quantity. There is no known cure.”
In a bid to help future generations Sue has organised the sponsored walk to raise funds for DBA UK, a charity which supports families of sufferers, and funds research projects.
Fifty walkers so far have been sponsored for the walk, clad in their “onesies”.
After meeting at about 2.30pm on September 13 at New Greens Social Club in High Oaks, they will then walk along Harpenden Road into the city.
The walk continues down Holywell Hill, before returning to New Greens for refreshments, a raffle and race night, followed by an auction.
Lynn said that she would push her daughter in a wheelchair when needed, but if there was a taxi firm which could help transport disabled people back to the social club, that would be appreciated.
She can be emailed at email@example.com
Additional sponsored walkers are welcome to join the event.
For more information on DBA see www.diamondblackfan.org.uk
To donate by mobile, text Sue’s justgiving page on 70070 - SUEB80 followed by the amount.