A DJ is raising money to help an Irlam woman receive medical treatment in the US with a 12-hour DJ gig online this Saturday from midday until midnight.
Barbara Mason, who has genetic Parkinsonian syndrome with neuro degeneration, needs to go to America to take advantage of latest developments in treatment for her condition.
Bex Hilton, otherwise known as DJay Bex has been a DJ for 15 years and is holding a Live Online DJ set, showcasing a range of different genres: from pop to rock, to soul and disco to support the fundraising by friends and family.
You can access the event by joining her Facebook page.
She has so far raised £400 through Babs Mason 12 hour DJ set fundraiser! With DJAYBEX | Facebook .
Here is the stream schedule for Saturday for…..
Babs Mason 12 hour DJ set fundraiser! With DJAYBEX
“She has trouble with swallowing. She can’t use her hands to be able to feed herself and she’s got a young boy who is only five years old. You can imagine how distressing that is, not to be able to be hands-on with him. She can’t cuddle him or give him his breakfast.
“So Bab’s mum and dad, who work full time look after the both of them while herself and her friends are trying their best to keep raising little bits of money here and there to be able to help. She’s only in her thirties so it is difficult to see someone so young go through something so devastating.
“I heard about her story online and really wanted to help. She is so well known and loved by the community. I would love to do my bit to help, even more so during these really difficult times.”
Hi, this is me! doing a 12 hour DJ set to raise money for a local lady. Please gimme some support. share FAR AND WIDE!!! https://t.co/XdYVib0Y8i
— Bex Phillips (@DJAYBEX) December 10, 2020
“I decided to do a live DJ stream fundraiser. So I’ll be playing on the Saturday 12th December from Midday to Midnight non-stop. I have never played for that long. We were originally meant to hold a gig over the summer but sadly Covid-19 put a stop to that so I am going online which will be just as fun and interactive. And I’m hoping that people will donate just £1 and maybe a share of the event of the stream itself, hopefully to raise some money for her and to be able to help with the cost of getting her the important gene therapy treatment in the US which is what we really hope will be able to happen.”
“Every little really does help and if people could spare just a couple of pounds even; it really does go a long way and make all the difference.”
Just 2 away from 140 potential attendees!
We have reached £400 (including the cash donations I have)
Thanks a lot Tasha Redmond and our anonymous donor for your donations last night! 💕
Just over 24 hours to go…..
Barbara is currently getting oxygen treatment for her condition but with the current Covid-19 pandemic, it is proving more difficult to get hold of certain treatments, that are not available on the NHS.
Barbara’s friend Vikki Sandford commented on the need for Barbara to get the treatment.
“I am a lifelong friend of Babs. I have known her since she was a little girl. My daughter went to school with her, so I have known her for just over 30 years.
“She is a wonderful young lady. She has only just turned 36 recently and she is unfortunately deteriorating. She did have a doctors appointment in London the other day and some good news came out of that. She has been given two different drugs to try, but there is also some research that has been ongoing in London and America, and it looks like, when that becomes available, the gene therapy, Babs will hopefully be able to go on the trial.
“She started getting symptoms a couple of years before her son Lawrence was born. She was getting a bit clumsy and stilted. They went to the doctors and nothing had come of it. She got pregnant with Lawrence and things deteriorated, although she could still hold him. She lives at home with her parents Barbara and Pete and her brother Jamie, and they now care for Lawrence, because she can’t. Her hands are no longer working and they’re curled inwards.
“They tried to give her botox injections into the hands, to relax them a little bit, but that has not worked.
“So we have looked at all different therapies that we could try for Babs. Emails have been sent all over the world. You name it, they have tried it. It has been quite a huge journey.
“We looked at one treatment, but that would have meant her having chemotherapy to kill off everything before she could have that therapy and that felt like too big of a risk for Babs so we’re hoping Gene Therapy will be the answer.”
“With the Covid-19 pandemic, treatment and appointments were stopped and she has only recently managed to receive an appointment.
“We had to keep Babs very safe and away from Covid. Babs’s grandad died of Covid a few weeks ago and it was so hard on the family. As for the vaccine, I have not spoken to Babs. Her parents are both working so hard and my heart goes out to the family. Babs’s mum works in a school as a cook and her dad is a driver. They work all the hours under the sun and they have a carer for Babs during the day. It is getting more awkward and difficult to fit around the caring rota and it has been really difficult during lockdown for the family, especially with schools remaining open.
They are hoping to get this gene treatment to help slow down the condition. Although the research is not ongoing, there is no cure. We are at £33,000 at the moment for fundraising and we did originally look to raise £26,000. With the aid of the Riff Raff Society,
“Martin Lewis has done wonderful things and raised money alongside lots of other people. We also run a raffle page and we’re always putting into the pot. We have also started to buy things that Babs needs like an airflow mattress as she suffers from bedsores that are really difficult to heal as well as an electrical heat pad for her chair.”
“What we hope from the treatment is that it will slow down her deterioration. She is such a wonderful young lady. Her smile says it all. It is really heartbreaking to see that she cannot do anything for herself anymore. She used to be such an adventurous young lady and has always worked and even took a gap year to do some travelling. We don’t have an end goal and we will keep going. If there is money left over once we have gotten this treatment, they have decided that it will be given to another charity to use. Every little really helps and goes a long way.”
To find out more information about Barbara’s story, visit the just giving page: Crowdfunding to Barbara Mason Treatment Fund. Raising money to help get this young Mum to America for treatment on JustGiving