July 25, 2022 11.07 am This story is over 20 months old

In pictures: Miles for Maggie raises over £8k towards research for rare disorder

A fundraising walk in memory of smiley Maggie

Over 200 people took part in and supported Miles for Maggie and are pictured here before the fundraising walk. | Photo: Steve Smailes for The Lincolnite

By Joseph Verney Local News Reporter

Over 200 people took part in and supported a fundraising walk called ‘Miles for Maggie’ in memory of a baby Lincoln girl who sadly died from a rare condition earlier this year.

Happy and smiley Maggie-May Williams was born four weeks early by c-section at Lincoln County Hospital on July 20 last year. Her parents Amber-Rose Bryans and Ryan Williams didn’t know she had a genetic condition, and in the weeks and months that followed Maggie-May saw hundreds of medical professionals in Lincoln, Nottingham and Leicester.

However, only one doctor was able to recognise she had Smith-Lemli-Opitz syndrome (SLOS), when she was three-and-a-half months old, and at this point she was put on cholesterol medication and her life expectancy was not known. She sadly died on January 11, 2022 at the age of just six months and her mum remains determined to push for more research about the SLOS.

SLOS is a genetic condition that affects many parts of the body. It is an autosomal recessive genetic condition caused by changes in the DHCR7 gene.

Miles for Maggie took place on Sunday, July 24 and saw a large number of people walk 25 miles in Maggie’s memory, starting and ending the route at The Lincoln Imp pub on Blankney Crescent.

Miles for Maggie was arranged by Amber-Rose Bryans (right) and her mum Tracey Frankman (left). | Photo: Steve Smailes for The Lincolnite

Along the route, mile markers were put up, including photos of Maggie’s on trees, and early discussions are already underway about what will happen for next year’s event.

Around £8,300 has so far been raised and donations continue to come in and be counted after the event, which also included a raffle with prizes from local businesses.

All proceeds will go towards raising money for research for SLOS – further donations can be made here.

Amber-Rose arranged the event with her “incredible” mum Tracey Frankman with further support from her aunt Lisa-Marie Loy.

Fundraising in memory of Maggie-May Williams. | Photo: Steve Smailes for The Lincolnite

Finishing the Miles for Maggie route at The Lincoln Imp pub in Lincoln. | Photo: Submitted

She told The Lincolnite: “It went really well and we raised so much money, and a lot of people were educated about what Smith-Lemli-Opitz is. It was a lovely day.

“It completely exceeded my expectations and made me feel quite emotional. It made me see how very loved my daughter is. Friends and family supported me and people I’d never met said how proud they were of me.”

Maggie-May’s mum described her as “happy and smiling constantly”.

Miles for Maggie raised awareness about a rare disorder in memory of a special baby girl. | Photo: Submitted

Amber would also like to thank all the businesses who supported the fundraising event, including Tesco who donated a big BBQ and patio set to the raffle, and Jewson who donated a £250 voucher.

Amber-Rose added that she has now teamed up with two doctors at Leicester Royal Infirmary, where Maggie endured three heart operations during a 10-week stay in hospital.
She will discuss with the doctors how more research into SLOS can be funded.