Girl, 2, battling extremely rare illness that only affects 20 people worldwide
A young girl is battling with an extremely rare illness that only affects 20 people worldwide, as her devastated parents have opened up about how they are trying to cope.
In describing how "hard" times have been, they have revealed that their two-year-old is still a "happy little princess", despite spending months in hospital.
The family have now revealed that the little tot may be forced to be in complete isolation for months soon, following a life-changing operation.
Olivia Volley, two, is battling with a rare disorder that affects only 20 people across the world, report Grimsby Live.
She was born three months prematurely, and spent the first 11 months of her life in hospital, but her parents were left questioning why she was constantly ill despite being discharged.
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Parents Sally and Jack Volley have only been given an explanation into her symptoms now, but have revealed it is still "something we have to adapt to every day".
The family are raising money in hopes that it will cover the costs of the stay, while Olivia is away from the family (Sally Volley)Recently, it was discovered that Olivia may be suffering from Sideroblastic anaemia with B-cell immunodeficiency, periodic fevers, and developmental delay (SIFD), causing a number of issues with her brain and well-being.
SIFD means Olivia has relentless fevers, and struggles to produce white blood cells and platelets as well as having delayed development.
Therefore, having to care for Olivia at all hours of the day - including driving her to and from hospital regularly - has meant that Sally was forced to quit her job.
Now, the Volley family have revealed that there are plans for a new stem cell transplant operation to help Olivia cope with some of the illnesses she has to face.
However, due to the nature of her illness, it will mean that the two-year-old will be in complete isolation for four to six months.
And with her family living in Marshchapel, Olivia's mum will have to stay in Newcastle for the duration.
Therefore, the family have decided to set up a fundraiser to help cover some of the costs with the move.
Speaking about the two-year-old's life after she was born, Sally said: "Olivia was born at 28 weeks and from day one she had to have blood transfusions and began life with two bleeds on the brain as well as a hole in her heart."
After nine weeks at Grimsby hospital, doctors struggled to find out what was causing Olivia's health problems, and so she was transferred to Leeds for further testing.
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The family then spent three months at the hospital and Olivia underwent rounds of genetic testing, which resulted in her being fed through a tube as she couldn't take anything orally.
After a number of tests, the doctors were still unsure about what was causing Olivia's illnesses and sent her back to Grimsby whilst they awaited further results.
For the first 11 months of her life, all Olivia had seen was the inside of a hospital.
Olivia was born three months prematurely and spent the first 11 months of her life in hospital (Sally Volley)Eventually, tests results showed she had no immune system, which led to her being given an Intravenous Immunoglobulin (IVIG) to help produce the antibodies her body could not.
It was also during this that Olivia was diagnosed with Sideroblastic anaemia and subsequently, SIFD.
However, the transfusion means she now has an iron build up in her body, which is causing further problems.
And being one of only 20 people in the world known to be suffering from SIFD, the whole process has meant that it has been difficult for Olivia's parents - who find themselves struggling to cope at times.
Sally said: "When we first found out, we were really surprised as it isn't something you think about when you're pregnant. I have two older children and those pregnancies were absolutely fine.
"It's not really something you can deal with as such, it's something we have to adapt to every day. For example, it's quite common for us to have to go to hospital almost every weekend to make sure Olivia is alright if she gets a temperature."
She added: "I've now had to give up my job to look after Olivia and Jack works away too so it is very hard on us at times. We both feel guilty about the other two children and he feels bad about working away, but we've got to keep a roof over our heads."
The stem cell transplant operation in Newcastle the parents are hoping Olivia will undergo will see her take on a number of tests and treatments, including chemotherapy.
Following this, doctors will decide if Olivia is healthy enough to withstand the operations before she has to be in complete isolation for four to six months to recover.
For Sally, this means staying in Newcastle with her - something that comes at a great expense - explaining: "It really takes a toll on us all. It's not just the emotional and mental side, but the finances too.
"We've never really had any proper family time as we're always at the hospital, but when we are all at home and well we make sure to do something. With all these costs in mind, we had to set up a GoFundMe."
She added: "We are asking anyone fortunate enough to be able to help with expenses relating to her treatment for the next year. Including accommodation, travel, specialist equipment and specialist clothing.
"Despite everything, Olivia remains a cheeky, happy little princess and to see her in this way is heart breaking, but we all have to stay fit and healthy to make sure we're there for each other."
The GoFundMe has currently raised over £2,500, as Sally and family say they are unbelievably grateful for the support they've received.
The mum added: "It's so nice to see everyone get behind us for this cause and we are so happy that people are helping our little princess, even in such a difficult time."
To donate to the GoFundMe, click here.
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