Support for Summa’s fight for Life against Susac’s
Written by Karen on January 14, 2019
Back in March 2017 our 21 year old, healthy, independent and beautiful cousin Summa started to get sick, she rapidly deteriorated into a state of not being able to speak or even move, also suffering severe memory loss which left her not being able to recognise her own 1 year old miracle baby Jasmine. This brought heartache and tears to her whole family. Her world, her family’s world and most of all Jasmines world had been turned upside down. Summa was diagnosed with a very rare disease known as “Susac’s Syndrome”. This disease is so rare approximately only 375 people have been diagnosed in the world.
After various medication trials and intense physio therapy, Summa’s condition has still not improved. After months of no change in Summas condition she is still unable to walk, she has no use of her left arm, has severely impaired hearing and struggles with memory loss still. Summa and Jasmine’s full time carer is now her mother. Summa then contracted Tuberculosis due to having a life threatening low immune system. Due to a clash in medication to treat TB and Susac’s, Summa is now fighting a losing battle and contracted Sepsis and she was hours away from losing her life. Summa pulled through from this but unfortunately the NHS will not fund the only other treatment available to help save Summa’s life.
Without this treatment she is under all different types of risks and we (her family) are not willing to accept this or give up without a fight. We are tasked with raising £32,500 which will pay for her treatment to fight this awful disease.
Summa’s family and friends started to raise awareness and donations by opening up a Fundraising Facebook page ‘Support Summa’s Fight for Life against Susac’s‘ and a Just Giving Page ‘Fundraiser by Summa Barker‘.
On Facebook, a fundraising raffle has been organised and request for prizes to be donated by local firms. Not only has there been a very generous response to this, but one local business man, Luke Blanshard from LBPM Ltd, donated £1000 to the cause and has offered to raise more donations by taking part in this years London Marathon.
Summa’s family have been overwhelmed by the support they have been given so far and the donations made in just a couple of days. At the time of writing this post the Just Giving page total was £9,767.00 of the £32,500.00 target.
Saturday 12th January, family and friends said on facebook:
As Summa’s family we are going to take this as far as we possibly can, we will not give up and we will fight and work hard to try and raise the money to get her the treatment she deserves and needs.
Summa’s cause has been retweeted many times and support from football players and boxers can be seen on their facebook page as well.
On Sunday 13th they wrote:
Summa’s family spent all day yesterday pushing her campaign and trying to get our girls story to go viral. Susac’s disease needs more research and funding and we are aware of this but what this campaign is doing for Summa right now is getting her the medication she needs. Summa is NOT too rare to care. We will fight this alongside Summa and we will never give up on her and we will not let the NHS do so either.
With the help from everyone yesterday and what started off as ideas on a piece of paper is now becoming a reality. We are raising awareness, we are getting Summas story out there and we are well on our way to raising the funds she needs and it is all thanks to you guys.
Don’t stop sharing, let’s keep it going. We want this story to hit every town, county and country but we can not do it without you.
From the bottom of our hearts…. Thank you again for helping our girl ?
Also, ITV’s Lorraine Kelly and Alan ‘Smudger’ Smith are backing Summa and this is all down to everyone sharing.
Today, Monday 14th January, the family and friends messaged:
Over a 100 prizes to be won. All proceeds going towards getting Summa the treatment she needs.
Thank you so much for your support already. Friends of friends can buy. Lets show the nhs what they should be doing for our girl to give her a chance in this life.
Contact us to buy your tickets…. near or far it doesn’t matter we can make it happen.Support Summa’s Fight for Life against Susac’s
BRFM will be following Summa’s story and promoting the Just Giving Page to help raise awareness and funds on a daily basis.