Family of a cancer-stricken girl are friends with her stem-cell donor
Family of a cancer-stricken schoolgirl have sparked up a lifelong friendship with the ‘guardian angel’ who saved the eight-year-old’s life after she donated her stem cells
- Skylah Ballentine-Brain was diagnosed with leukaemia as a baby
- After chemo failed, her family were told to ‘let her die peacefully’ at home
- Refusing to give up, stem-cell donor Samantha Perry was found in January 2013
The family of a cancer-stricken schoolgirl have sparked up a lifelong friendship with the ‘guardian angel’ who saved her life.
Skylah Ballentine-Brain, now eight, was diagnosed with acute lymphoblastic leukaemia before she turned one, when her immune system became too weak to fight off colds, leaving her with recurrent pneumonia.
After undergoing intensive chemotherapy in South Africa – where the family lived at the time – the youngster was given the all-clear in February 2012, only for the aggressive cancer to return that October.
Doctors warned her parents there was little more they could do and told them to ‘let her die peacefully’. Refusing to give up, the family flew back to the UK where the youngster was told she was too ill for chemotherapy to have any effect.
With a stem-cell donor being Skylah’s only hope, the family waited anxiously for three months before mother-of-two Samantha Perry, now 44, was brought forward as a donor in January 2013. The youngster had the transplant that May.
Now healthy, Skylah’s parents Zelease, 40, and Matthew Ballentine-Brain, 44, claim Mrs Perry ‘mended their family’, with the youngster even calling the ‘guardian angel’ her ‘second mummy’.
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Skylah Ballentine-Brain was diagnosed with acute lymphoblastic leukaemia at less than one-year-old. The youngster is pictured right in hospital in November 2012. After being told a stem-cell transplant was her only hope, the youngster met her donor Samantha Perry (left) last year
The families met up in a hotel in Manchester last September, two years after Skylah sent Mrs Perry a surprise Christmas card. Left-to-right are Mrs Perry’s husband John, son Aiden, 14, Mrs Perry, Skylah Ballentine-Brain, Skylah’s mother Zelease and her brother Teghan, 11
The families were put in touch by the charity Anthony Nolan, which passed on a Christmas card made by Skylah to Mrs Perry in 2015.
Mrs Perry became a donor after losing a loved one to leukaemia as a child, but never thought she would meet the youngster whose life she saved.
Strict rules surrounding donation mean direct contact between recipients and donors is only allowed after two years when it will be clear whether or not the transplant was a success.
The Christmas card sparked a series of emails, letters and pictures to be sent between Skylah’s family and Mrs Perry, who lives in Wickersley, South Yorkshire, with her husband John, 49, and children Aiden, 14, and Sophie, 19.
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After two years of back-and-forth, the families finally met at the Principal Hotel in Manchester on September 15 last year.
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
Although normally shy around strangers after spending so long in isolation, Skylah immediately took to Samantha, who gave her a silver necklace with an ‘S’ pendant.
Mrs Perry was also initially apprehensive but described their meeting as ‘wonderful’.
‘I was very curious during the years after my donation to know if it had worked so meeting Skylah for the first time was wonderful,’ she said.
‘For all of us it felt like the final piece in the puzzle, the final part of this long and grueling journey that we both, by chance, became part of. I felt really honoured that they called me Skylah’s “guardian angel” and “second mummy”.
‘Skylah and I share the same blood and I feel a very close connection with her as I would towards my own family.’
The meeting was also everything Skylah had expected. She said: ‘I knew an angel had helped me to get better when I was ill and I knew she must be very kind.
‘When I met her, I knew I was right because she is very beautiful and very kind too.’
Last year’s Christmas card from the youngster even read: ‘Dear Sam and family, Merry Christmas, I love you lots!’
Although a happy time, the festive season is also a period of melancholic reflection for Mrs Ballentine-Brain, who spent several Christmases in hospital with her sick daughter.
‘We would be apart at Christmas, with Matthew looking after the boys and Skylah and I in hospital,’ she said. The couple are also parents to boys Kheya, 13, and Teghan, 11.
‘Now though, thanks to Sam, we can be happy again together and start to remember what it’s like being a family at Christmas time,’ Mrs Ballentine-Brain said.
Pictured left at their meeting, Skylah calls Mrs Perry her ‘beautiful guardian angel’ and even refers to her as her ‘second mummy’. The two families met (right), with the Ballentine-Brain’s crediting Mrs Perry’s selfless donation for saving Skylah’s life and ‘mending their family’
After the Ballentine-Brain’s spent years apart while the mother (left) stayed in hospital with Skylah (centre), she said they can finally be ‘happy again thanks to Sam’ (right)
Once diagnosed, Skylah started chemotherapy at the Red Cross Hospital in Cape Town, where the family moved to be nearer Mrs Ballentine-Brain’s parents. Mrs Ballentine-Brain lived with her daughter on the ward, sleeping next to the youngster’s cot (pictured)
Pictured left on her sixth birthday, the now eight-year-old is healthy and attends school like any other youngster. She is pictured right at Birmingham Children’s Hospital in November 2012. The family flew home after deciding she would get the best possible treatment in the UK
Skylah’s problems began at just six months old in May 2011 when she developed a series of nasty colds.
Her parents – who moved the family from London to Cape Town in 2005 to be nearer Mrs Ballentine-Brain’s parents – were not overly concerned until Skylah developed persistent pneumonia.
Tests carried out in August 2011 revealed the youngster’s weak immune system was being caused by acute lymphoblastic leukaemia – a blood cancer that affects the white blood cells.
Speaking of the diagnosis, Mr Ballentine-Brain said: ‘It was absolutely heart-wrenching, an incredible pain that courses through your whole body.
‘From then on everything changes. Things you thought mattered before like your job and your mortgage suddenly become irrelevant and your whole life shifts to focusing on one thing – getting your child cured.’
Not even one-year-old, Skylah – who has dual nationality – started chemotherapy at the Red Cross Hospital in Cape Town. Her mother lived with her on the ward, sleeping beside her in a cot each night.
After being given the all-clear, Skylah’s parents’ worst fears were realised when doctors told them the highly-aggressive cancer had returned.
‘That was appalling,’ Mrs Ballentine-Brain said. ‘It was worse than hearing she had leukaemia because it just felt like she’d been through so much already and this evil cancer was still doing all it could to take her away from us again.
‘The doctors painted a bleak picture, and when asked their personal opinion of whether to restart chemo or stop fighting, they suggested we should go home with Skylah and let her die peacefully, without having to go through more treatment.’
But the couple vowed to do everything in their power to help their daughter and decided she would get the best possible treatment in the UK.
They therefore sold up and flew to Birmingham, where Mr Ballentine-Brain’s operations management company has an office.
Skylah is pictured with her mother and brothers at Birmingham Children’s Hospital in March 2013. After being told she was too ill for chemo to have any effect, a stem-cell donor was found in January 2013, however, the youngster did not have the transplant until May that year
Skylah is pictured left with her mother and brothers in hospital in January 2013 – the month they learned a donor had been found despite the youngster’s ‘rare tissue type’. Pictured right at the end of last year, Skylah is living at home with her family and excelling at school
Skylah is pictured with her father Matthew Ballentine-Brain in June 2013 – a month after her transplant. He described being told a donor had been found as an ‘unbelievable moment’
Once admitted to Birmingham Children’s Hospital, Skylah’s family were told she was so ill that chemotherapy would have no effect.
With a stem-cell transplant being her only hope, the family were dealt another blow when they learned Skylah has a rare tissue type, with only a handful of donors in the world being suitable.
But in January 2013 their luck changed when Anthony Nolan told them a suitable donor had become available.
Stem-cell transplants are used to treat conditions, like leukaemia, where the bone marrow is damaged and does not produce healthy blood cells.
Speaking of hearing the news a donor was available, Mr Ballentine-Brain said: ‘That was an unbelievable moment.
‘We knew the chances were small, but we didn’t lose hope and being told someone out there, who we didn’t know anything about, was going to help Skylah just opened a door and gave us a future.’
She finally had the procedure in May 2013 at Great Ormond Street Hospital, London. And by September the following year, was well enough to start primary school.
The family are pictured during Christmas 2010, before Skylah became unwell
Pictured left in August 2011 after just being diagnosed, her parents became worried when her near-constant colds developed into persistent pneumonia. Pictured right on holiday in Spain aged four, doctors initially told her parents to ‘let her die in peace’ when treatment failed
For Mrs Ballentine-Brain, the ordeal has been an emotional rollercoaster.
She said: ‘I just hope that our story can give hope to people who might be going through hell now and also be a call to action for anyone who thinks about donating stem cells as Matt and I now are.
‘Just one person donating helped mend our broken family and make us the happiest parents in the world.’
Terence Lovell, director of engagement at Anthony Nolan, said: ‘We are happy Skylah is doing so well. None of this would have been possible without Sam, who gave Skylah and her family the greatest gift imaginable, the gift of life.
‘We are aiming to raise more funds, more awareness and, recruit more young people to the Anthony Nolan register.
‘Anyone wanting to support our work can visit our website and make a donation, which will help give someone like Skylah, a second chance of life in the future.’
Find out how to become a stem-cell donor here.
Skylah is pictured arriving home – surrounded by family – after her transplant in July 2013
Pictured last year, there is no sign the eight-year-old was once fighting for her life
Skylah is pictured with her mother and father – who described themselves as the ‘happiest parents in the world’ – along with her brothers, a month after the transplant in June 2013
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