Naomi Loy, from Liverpool, died in June after a lifetime battling the disease she was diagnosed with at just three months old – with her family now holding a memorial event in her honour
A woman has died aged just 35 after suffering years of ‘unimaginable pain’ caused by Sickle Cell Disease.
Naomi Loy, from Liverpool, died in June after a lifetime battling the disease she was diagnosed with at just three months old.
Sickle Cell Disease is the name for a group of inherited health conditions that affect the red blood cells and is a serious and lifelong health condition, particularly common in people with an African or Caribbean family background, reports the Liverpool Echo.
Sister Rebecca Loy said: “Whenever Naomi had a crisis it was all systems go.
“My strong sister who played rugby, put up wallpaper, hiked mountains; you name it she’d find a way to overcome it, would be reduced to being utterly helpless and totally overcome by unimaginable pain.
“Naomi, my beloved sister, often said it felt like thousands of needles being hammered into her bones all at once.
“We’d take her to the hospital, and it was only after years of visits and finally being given a dedicated specialist in the field to prescribe care did those visits become more of an ordered though always traumatic affair.
“In her short life she had already suffered septicaemia and pneumonia on several occasions”.
People born with sickle cell disease tend to have problems from early childhood.
The main symptoms of sickle cell disease are painful episodes called sickle cell crises, which can be very severe and last up to a week.
Other symptoms include an increased risk of serious infections and anaemia (where red blood cells cannot carry enough oxygen around the body), which can cause tiredness and shortness of breath.
In memory of Naomi a fundraiser is being held in Liverpool’s Baltic Triangle on Sunday December 19, for sickle cell treatment research and to raise awareness about the condition, which usually affects sufferers more so in the winter months.
The Winterfest event, organised by Rebecca and friend Hayli Kinkade – in conjunction with BlackFest Creatives – will have speakers talking about the impact of sickle cell disease and a night of entertainment by local artists supporting the fundraiser.
On the night the event will raise funds for the Haemoglobin Unit at the Liverpool Royal University Hospital’s sickle cell Department and also for the national Sickle Cell Society.
Rebecca said: “The night is an amazing way to have fun while fundraising. All profit from the tickets will go to supporting our local Sickle Cell Society as well as the National Sickle Cell Society”.
“Attendees are encouraged to wear white to symbolise the suffering in winter as this is the worst time of year for people with sickle cell”.
On the evening Rebecca will give a speech in memory to her sister and talk about the impact of the illness on families, meanwhile Andy Houghton, Haematology Clinical Nurse Specialist, who was assigned to Naomi, giving an insight into sickle cell to help raise awareness.
Performers on the night will include the main act; Amique and the Ecstacy, Wavertree Gospel Choir, IamKyami, Ni Maxine, Remee, Sorelle, Shak Omar, Tyrone Lewis and DJ Shenice. Caribbean food will be available on the night provided by RayRayz.
A Go Fund Me page has also been set up in memory of Naomi.
Posting on the page Rebecca wrote: “I’m raising money for Sickle Cell Disease.
“My beautiful big sister on the left, passed away, needlessly this year from this disease.
“I believe if there were more funding for research and general knowledge in the medical community many deaths due to sickle cell, as recent research published by the Sickle Cell Society has found, could be prevented.”
So far over £800 has been donated towards the £5,000 target.
An All-Party Parliamentary Group (APPG) (on Sickle Cell and Thalassemia) was formed in 2008 with the aim of keeping the topic on the political agenda and to facilitate dialogue between policymakers and those affected by the illness.
They produce informal reports on the treatment of people living with sickle cell in the fields of employment, NHS care and the benefits system to promote better care and knowledge of the impacts on those who suffer from the illness.
In October this year the NHS announced the first treatment for Sickle Cell Disease in over 20 years will be rolled out to thousands of patients in England.
Sickle cell sufferer Andrew Dekannwarri, who was diagnosed later in his adult life said: “The reason we need more awareness of this life’s threatening disease is many of the people who have this don’t know what they are facing for many years”.
Tony Excell who has run fundraising events in the past, after his close friend died due to sickle cells said: “In the intervening years since my fundraising efforts, I am optimistic about the future for sickle cell sufferers.
“The NHS recently announced treatment in over 20 years will be a major step forward for thousands of people living with this condition.
“The success of this new treatment will ultimately be determined by how many Sickle cell sufferers it is able to reach, so we must remain vigilant and ensure that it is kept high on the agenda of both the NHS and Government”.
For tickets for the event visit here
You can also make donations via the GoFundMe page here