22nd Sep, 2020

Brave Bromsgrove girl Millie raises £1,814 for Rare Disease UK

A BRAVE Bromsgrove girl who has a rare genetic disorder has raised £1,814 for charity.

Millie Bedford, who turned ten yesterday, was diagnosed with Wiedemann-Steiner Syndrome in January after having problems since she was a baby.

She was always small, struggled with her breathing and has global development delay.

Healthcare professionals could not work out what was wrong as all her blood and hormone tests came back normal.

At eight months old she had an adenoidectomy as her nasal passages were completely blocked and she was burning off too many calories just to keep herself alive.

Her mum Charlotte said: “They thought that Millie would then ‘catch up’ but she didn’t.”

In 2015 she was entered in the 100,000 Genomes Project run by the NHS, designed to bring advanced answers for those who were undiagnosed.

“Finally we had results five years later which showed she had Wiedemann Steiner Syndrome.”

It is a rare genetic disorder that causes developmental delay, unusual facial features, short stature, sleeping difficulties and other issues.

“We had the good news that Millie has a normal life expectancy.”

Those diagnosed with it were once thought to be as rare as one in a million but research shows it is more like one in 40,000.

Even so it is a fairly new syndrome and there is very little information about it.

Charlotte added: “I have been able to discuss this syndrome with other parents on the Facebook group, which is great, and nice to know that Millie isn’t alone.

“The similarities between these Children with Wiedemann-Steiner is amazing.”

Because there is not a charity set up yet, Millie and her mum decided to fund-raise for Rare Disease UK.

“We know how frustrating it is not knowing what is wrong with your child, and not knowing how to help them.

“We needed a reason, after ten years of being under Birmingham Children’s Hospital having all sorts of tests.”

The pair initially planned a fund-raising night at their local social club which would include a raffle but due to the pandemic it could not go ahead.

Undeterred and after getting a variety of prizes they sold tickets and drew the raffle on Facebook Live.

Charlotte said: “We are overwhelmed with the support from everyone for both prizes for the raffle, and donations for raffle tickets.

“Millie is a very special little girl that seems to win the hearts of everyone.

“She doesn’t notice that she is different to other children, and she always has a massive smile on her face.”

She added she, stepfather Pete, older sister Maisie and younger brother Reggie were all so proud and would continue to fight into WSS.

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