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Michelle Ferrer avatar
Michelle Ferrer

Layla's Rainbow

Fundraising for Histiocytosis UK

155 %
£38,856
raised of £25,000 target
by 770 supporters
Donate

Histiocytosis UK

We fund research & information support to improve the lives of patients & families

Charity Registration No. 1158789

Story

I know all parents think their child is special but Layla really was. Always ahead of her time. She was walking at just nine months, out of nappies by her second birthday and at 2 years old, you could pretty much have a full conversation with her. She had something about her.  Wise beyond her years almost like she'd been here before. She had a very loving, caring nature and always shown empathy towards others even at such a young age. She was popular at school and loved her friends. She'd put her arm around them and talk to them like she was the grown up and they were the child. She had an old soul for a little girl and often people would say she was like a 'little old woman'. 

Layla also loved to sing and dance. She was a great little entertainer, always doing shows for us and she was funny with it too without even trying to be. She oozed confidence and charisma and would definitely stand out in a crowd. You'd always remember our Layla. With her wild ginger curls, infectious smile and her big personality, she stole the hearts of all who knew her. What we didn't realise was, she was only borrowed to us for 6 short years and was needed in a better life. She was needed in Heaven. 

On November 24th, 2017, I had a call from school to pick Layla up as she wasn't feeling very well. When I arrived, she was lying down with temperature. I thought a bit of Calpol and cuddles from Mummy would do the trick and had no doubt she'd be back at school after the weekend. Unfortunately, that wasn't the case. By the Sunday evening, she'd become so lethargic and spiked a temperature of 40.9. We also noticed she had come out with an unusual looking rash. We made our way to A&E. After her first blood test, her CRP levels (which detect inflammation in the body) were 300 plus. Which suggested an infection and a very nasty one at that. We thought at that stage we were dealing with Sepsis or Meningitis. She was transferred to Bolton Royal where she was treated for over a week with antibiotics but Layla wasn't showing any signs of improving. They'd ruled out Sepsis and Meningitis after a series of tests and Layla's illness was becoming more and more of a  Mystery. The Doctors at Bolton told us there was nothing more they could do for Layla and the specialist's teams at Manchester Royal Infirmary wanted Layla there. I could see in the doctors and nurses faces that even they were starting to worry and the fact they called us an emergency ambulance to MRI made me think we were dealing with something life-threatening.

The team at Manchester were brilliant and reassured us that she was now in the best care and they would make her better. But Layla's health continued to deteriorate and she was placed in a high dependency unit while doctors continued to run more tests as they still didn't have a confirmed diagnosis. 

On Saturday 9th December, Layla took a turn for the worst and was rushed into intensive care and put into an induced coma. The docs warned us then, she may not survive but against the odds, she stayed strong and continued to fight. Whilst in a coma, the docs took a sample of Layla's bone marrow and shortly after that they were able to diagnose Layla with an extremely rare blood disease called HLH which is short for hemophagocytic lymphohistiocytosis. Of course, we'd never heard of it but as we started to research, it didn't make sense. How could this happen to our Layla? She was singing and dancing at a Little Mix concert only two days before. She was never sick!! she was everything a normal happy healthy little girl should be! 

We were told to expect a long road to recovery for Layla. At least an eight-week hospital stay and months of chemotherapy. We prepared ourselves for this and was prepared to do whatever it took to make our girl better. We just wanted her to wake up. 

On the 15th Dec, her 6th Birthday, she opened her eyes. We put up balloons by her bed and her brother and sister and grandparents all came to see her. It was a happy moment but also very sad that she was spending her bday in the hospital and so poorly. Not quite the birthday we had promised her. However, the docs were really pleased with Layla's progress and moved her into an oncology ward which would become our home until Layla was well enough to come home. 

Unfortunately, the very next day, Layla's health deteriorated quickly and drastically and she ended up back in Intensive Care and put back in an induced Coma. Layla was bleeding internally and they sadly couldn't stop the bleed. The machine by this point was the only thing keeping her alive. It was the worst two days of our life. On the Sunday night, while we were sleeping, the hospital called us to tell us that Layla was unstable and basically prepared us for the worst. We called our parents who arrived shortly afterward and we all stood round Layla while they fought through the night to save her. It was not meant to be, she was too poorly. It was time to say goodbye. 

Our beautiful daughter passed away at 5.05am on the 18th December and our lives changed forever. 

There's a chance Layla may have survived had they diagnosed her sooner. Therefore I am very passionate about raising money for this charity to help fund the research needed to uncover the causes of HLH, diagnose early and hopefully finding a cure. We hope that no other parent has to go through what we've been through. 

Thank you in advance,

Michelle, Paul & family and of course Layla xxxxx




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