6 year old Seren-Grace can't talk, walk and barely sleeps - and here's how you can help her
‘Despite everything she has been through, she is just happy and loving. All she wants to do is cuddle, kiss and play with your hair’
This is Seren-Grace Brady who loves to give cuddles - but behind the beautiful smile lies a world of health battles.
The six year old hardly ever sleeps. She has little immune system which means she easily picks up illnesses which often leads to seizures and CPR.
Seren is seen regularly by 21 health specialists and needs 24-hour care as she lives with a condition which is so rare that only 250 children in the world have it.
But you can help to give support to Seren, who lives on the outskirts of Hartlepool, and here’s how.
Sunderland woman Maureen Thompson is hoping to raise much-needed funds so that the youngster can get specialist physio as well as speech and language support. Details of her planned fundraising night are listed below.
Seren has Tatton Brown Rahman Syndrome which is a rare genetic disease which can cause developmental delay and overgrowth. She may be only six but her syndrome means she is already 4ft 6ins tall and wears clothes meant for an 11 or 12 year old.
Her mum Sha’ani Bellingham, 35, originally from Thorney Close in Sunderland, cares for her daughter 24 hours a day and said: “Seren is happy, friendly and loving. She is so strong and I have never met a child as resilient as her.
“Despite everything she has been through, she is just happy and loving. All she wants to do is cuddle, kiss and play with your hair.”
Parents Sha’ani and dad Sean Brady, from Newcastle and who works as a retail manager, have faced health problems with Seren since she was born.
They have started their own JustGiving page which you can find here.
Sha’ani said: “We went through two years of investigations before we got a diagnosis.”
Eventually, genetics specialists in Newcastle diagnosed that Seren had a rare genetic disorder caused by mutations in the DNMT3A gene.
Sha’ani praised Maureen for her support and said: “She is absolutely fantastic and the fact she is helping is brilliant.”
Each year, Maureen has selected local children to support and then held a fundraising evening at The Alexandra in Grangetown.
She has raised thousands of pounds for children facing up to a whole range of health issues.
This year, she is supporting Seren-Grace as well as Denvah Finlay who is one of only 40 children to be diagnosed with Bilateral Retinoblastoma, a rare and aggressive form of eye cancer. Denvah is blind in her right eye and there are fears she may have to have the eyeball removed.
Maureen said: “Seren-Grace has a very low immune system which if she catches anything can send her into a seizure which then requires her staying in hospital for up to a week at a time. With the public’s help I know we can raise funds to help these two beautiful children.”
The Allan Thompson Fundraising Event will be held at The Alexandra Steakhouse in Sunderland on Saturday, November 14. Before then, Maureen is also holding raffles and appealing for cash donations. Find out more at https://www.facebook.com/events/the-alexandra-steakhouse/allan-thompson-fundraising-event/999650182913143/