Tributes paid to much-loved St Albans woman with rare disorder

PUBLISHED: 16:55 29 September 2016

Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.

Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.

Photo supplied

The family of a St Albans woman with a rare disorder who had hundreds of blood transfusions have paid tribute to her generous nature and strong spirit.

Forty-five people walked through St Albans city centre to raise more than £2,000 for research into a blood disorder that is so rare just 1,100 are afflicted worldwide.Forty-five people walked through St Albans city centre to raise more than £2,000 for research into a blood disorder that is so rare just 1,100 are afflicted worldwide.

Sue Jones, otherwise known as Susan Browning – or ‘Little Sue’ as she was fondly called – died on August 13, aged 36.

Born in St Albans City Hospital in 1980, by the time she was six months old she had been diagnosed with Diamond Blackfan Anaemia (DBA), a rare bone marrow failure disorder, where patients fail to produce red blood cells properly.

Her mum, Lynn Jones, has paid tribute to her daughter, saying: “Sue’s life always evolved around hospital appointments, but even when she was a child, she never let any of it get her down, she was always determined to be treated like a normal little girl.

She added: “Eventually though this rare and cruel disorder started to take a toll on her health that she could no longer ignore.

Forty-five people walked through St Albans city centre to raise more than �2,000 for research into a blood disorder that is so rare just 1,100 are afflicted worldwide.Forty-five people walked through St Albans city centre to raise more than �2,000 for research into a blood disorder that is so rare just 1,100 are afflicted worldwide.

“It took her strength, her eyesight and her mobility, but Sue still kept cheerful for the main, and tried not to let anyone except family see her pain.

“She always used to say ‘cheer up mum ... there’s always someone worse off than us’.”

When the Herts Advertiser wrote about Sue two years ago, ahead of a charity walk to raise money for research in to the condition, the New Greens woman had already underdone over 500 transfusions.

Friends, including former classmates who also attended Townsend School, joined Sue for her ‘Onesie Walk’ through St Albans city centre in 2014, raising thousands of pounds as a result.

Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.

Reflecting upon the Onesie Walk event, Lynn said that brave Sue managed to walk “a fair bit by herself, although she was ill at the time and mainly wheelchair-bound”.

So successful was the fundraiser, that over £4,200 was presented to charity DBA UK.

Unfortunately, Sue suffered from her mammoth effort to participate, with the walk causing two breaks in her back.

These failed to heal, and she ended up in a back brace.

Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.

Lynn recalled: “Sue’s health went down hill from that point on and following quite a few health problems, Sue lost her fight with DBA on Saturday August 13.”

Last Tuesday (20), a special funeral procession was held in St Albans, in celebration of Sue’s life.

Lynn said: “Sue always said she wanted a horse-drawn carriage, a sea of pink flowers, her little dog Marley - who I have to say was the centre of attention all day - and all the people who helped throughout her life in the good times and the bad.

“She wanted a celebration of her life and not a wake. And with the help of some wonderful people that is exactly what she got.”

Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.Brave 'Little Sue' - Sue Jones, otherwise known as Sue Browning, has sadly died. She had a rare condition, DBA.

Lynn said that having “laid my baby to rest” a charity sale is being held this Saturday, October 1, to raise money for DBA UK, in honour of her daughter.

She explained: “Those who knew Sue knew she was a hoarder; she had a heart of gold and was always buying things for people, lots of things that never actually got to be given. She had mountains of shoes, clothes, scarves and so much more, that she never even got to wear, still with labels on, or only worn once. And after taking bags and bags of stuff to charity shops, it was breaking my heart that charities other than the DBA were benefiting from our loss.

“So on Saturday October 1, we will be holding a charity sale in honour of Sue, for DBA, at the New Greens Social Club, High Oaks, at 5pm.

“The idea is to give everyone the chance who knew Sue to come and take something to remember [her] by, and put a little something in the DBA collection bucket.

“I think Sue will be looking down and smiling at this idea. My heart will be forever broken; I feel like my soul is being ripped apart, but at least for Sue, there will be no more pain.”

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