The parents of a five year-old girl with a rare form of leukaemia face a race against time to find a bone marrow donor to save her life.
The parents of Kaiya Patel of Northwood, London, have just two months to find a match but fear that they won’t because their daughter is Asian.
Five year-old Kaiya, from Northwood, needs a stem cell transplant in the next two months if she is to survive her acute lymphoblastic leukaemia
‘It was a crushing blow’
Mother Annu and father Ruchit Patel, both 37, contacted a friend who is a doctor after noticing bruises on their daughter’s legs on March 28.
The friend sent them immediately to A&E, where Kaiya was diagnosed with a rare form of blood cancer called acute lymphoblastic leukaemia.
A transplant could save Kaiya’s life but it is possible none will be found because there are not enough Asian people on the stem cell register.
Mr Patel, who works as a lawyer in London, told Mail Online: ‘We had been leading a pretty normal life and were incredibly happy with two little girls going to school and learning ballet and gymnastics.
‘We noticed quite substantial bruises on Kaiya’s legs but the school had no reports of her injuring herself.
‘I sent pictures of the bruises to some doctor friends and they said to take her to A&E.
Bruising on Kaiya’s legs was the only sign she was unwell, her parents say, and they only took her to A&E as a precaution – but it turned out to be more than just clumsiness
‘We were due to fly on holiday that afternoon so I took her to get checked out in the morning. But the doctors ran some blood tests and told me we wouldn’t be flying anywhere – it was bad news, and they thought it was leukaemia.’
WHY DO ETHNIC MINORITIES STRUGGLE TO FIND MARROW DONORS?
- In the UK, northern Europeans have about a 69% chance of finding a matching stem cell donor, but that drops to just 20.5% for black, Asian and minority ethnic (BAME) people.
- This is because BAME people only make up around 15% of the donor register, whereas the majority are northern European.
- This makes a difference because a person’s tissue type is largely determined by their ethnicity so people typically find a better match with someone of the same ethnicity.
- This is not always the case, but it is a big factor in finding a suitable donor.
- 75% of UK patients won’t find a matching donor in their families, so they have to search for an unrelated donor.
Source: Anthony Nolan
Kaiya was sent by ambulance to Great Ormond Street Hospital and given chemotherapy – she stayed in the hospital for four weeks.
The family have been told Kaiya needs a stem cell transplant, also known as a bone marrow transplant, in order to survive.
While 60 per cent of white British people can find a matching donor, only 20.5 per cent of black and ethnic minority people can, according to the Anthony Nolan charity.
‘Thousands’ have offered help but no match has been found
Mr Patel has set up Facebook and Twitter pages to try to find a donor.
People wanting to help can join the Be Kaiya’s Donor Facebook page to get involved.
Thousands of people have responded through social media and, Mr Patel says, 6,000 people have registered to be tested to see if they are a match.
Celebrities including Ricky Gervais and Sanjeev Bhaskar have shared the family’s plea on Twitter, but a suitable donor has yet to be found.
The family have put their lives on hold to try to find a donor for Kaiya (right), pictured with her mother Annu, sister Annika and father Ruchit
The Patel family were due to fly on holiday to the US on the same day as Kaiya’s diagnosis – they had led a ‘normal’ and ‘incredibly happy’ life, Ruchit told MailOnline
On a ‘cocktail’ of drugs
WHAT IS ACUTE LYMPHOBLASTIC LEUKAEMIA?
Acute lymphoblastic leukaemia (ALL) is a type of blood cancer that starts from young white blood cells in the bone marrow.
There are around 810 new cases in the UK every year. In the US, ALL affects approximately 1.7 adults per 100,000.
Anyone can develop ALL, however, it mainly affects younger people.
Many ALL symptoms are vague and flu-like, such as:
- General weakness
- Frequent infections
- Bruising or bleeding easily, including nosebleeds, heavy periods and blood in the urine or faeces
- Unexplained weight loss
- Bone or joint pain
- Swollen lymph nodes
- Feeling full
- Paler skin than normal
Risks for developing ALL include exposure to radiation, smoking, being overweight and having a weak immune system.
Research suggests being breastfed and exposed to childhood infections may reduce a person’s risk.
The main ALL treatment is chemotherapy. Patients may also have radiotherapy, steroids or bone marrow transplants.
Source: Cancer Research UK
‘Kaiya is on a cocktail of chemotherapy and immunosuppressants and they are having an effect on her and her appearance – she is losing her hair,’ Mr Patel added.
‘We try to keep her spirits up but it’s difficult to know how much to tell her. She knows she’s ill and that she has to keep taking the medicine and that she can’t go to school or do the things she enjoys.
‘She has been able to come home to sleep in her own bed at night, but she is still a day patient at the hospital most days.
‘We’re desperate to find a donor because it’s the only way to save her. People’s response to our publicity has been wonderful; they really want to help.’
Acute lymphoblastic lymphoma is a rare and aggressive type of blood cancer which requires immediate treatment.
The condition causes bone marrow to release large numbers of white blood cells into the body before they are ready.
This lowers the red blood cell count and makes the body more susceptible to infection.
Symptoms include paleness, feeling breathless or tired, easily bruised skin – as in Kaiya’s case – and repeated infections in a short space of time.
‘You don’t think bruises could be something so serious’
Mr Patel said the family did not notice any obvious symptoms that something was seriously wrong.
‘When I look back I remember she did have a couple of nosebleeds,’ he said. ‘But you just don’t think that or bruises are symptoms of cancer.
‘The type Kaiya has is very dangerous and very aggressive – in most cases it’s fatal.
‘It’s extremely rare and makes up 0.1 per cent of leukaemia cases. From what we could find Great Ormond Street has only had one case in the last ten years.’
All of Kaiya’s immediate family have been tested and none of them are a match to be a stem cell donor. Pictured here with her sister Annika (left), now three years old
Mother Annu has had to stop working at the family’s microbrewery restaurant in order to look after Kaiya and her sister Annika, who is three.
The family are appealing to people to join the stem cell donation register – more information is available on the Anthony Nolan website.
Mr Patel said: ‘There’s a much worse chance of finding a matching donor if you’re Asian.
‘It’s not because people don’t want to help – we’ve had an overwhelming response.
‘Perhaps people think stem cells are deep down and hard to extract, but testing to see if you’re a match is as simple as a cheek swab in most cases.’
Go to the ‘Be Kaiya’s Donor’ Facebook page to find out more about how you can help.