‘My daughter’s life-limiting conditions don’t define her – she’s a warrior and a gift’

Erin lives with life-limiting complex medical needs.

The eight-year-old is unlikely to reach her teenage years and her day-to-day life is peppered with regular medication, inpatient stays at Colchester Hospital and regular medical monitoring.

Her mum Helen Sadler has cared for her since birth and dedicates her life to looking after her little girl.

Helen has shared her story about life with ‘Erin the warrior’.

Woman in glasses next to girl in white hat both looking at camera

Helen Sadler with daughter Erin Sadler

“Erin has 26 doses of medication a day. Seven in the morning, 10 in the afternoon and nine before bed.” Says Helen. “I spend a lot of my life drawing up syringes and preparing medication.”

Erin has heart disease, liver disease, end-stage renal failure, severe hypertension and idiopathic thrombocytopenia. She’s received 118 blood transfusions and is a heart attack survivor.

Helen knew something was wrong when Erin was a baby and she developed severe lesions all over her body. Helen, who has lupus, was at a medical appointment for herself with seven-month-old Erin alongside. Although the appointment wasn’t for Erin, the clinician saw the baby’s lesions and sent her for further investigations that resulted in Erin’s first admission to Great Ormond Street Hospital.

Child with oxygen mask on face and eyes closed

Erin during one of her hospital stays

A series of hospital stays and appointments, scores of blood tests and checks began and by three years old Erin had been diagnosed with kidney disease, heart disease, liver disease, she had issues with her blood and spleen as well as having developed sepsis multiple times. Due to her multiple complexities, a kidney transplant or dialysis isn’t an option.

Helen said: “It’s been horrifying at times. Being told that Erin could bleed to death and there’s a very serious possibility haemorrhaging could kill her. I nearly lost her in 2019 when she had a cardiac arrest in my arms. She was without a pulse for over 14 minutes and I thought she had gone.”

The pair live with Helen’s dad after she had to sell her home and spend her savings surviving because she could no longer work, yet despite the difficulties, they live life to the full, never knowing what’s around the corner.

Girl in straw hat in electric wheelchair

Erin in her ‘party bus’

“Erin is a diva – a hooligan – but she’s such a gift! She has a mobility vehicle covered in pink butterfly and fairy decals, with a diamanté steering wheel and we call it her party bus, we sing everywhere we go in it.

“Erin needs to be doing something 24/7. When she’s well enough we go out, she loves animals, I take her to zoos or farms and she has some friends, although she can’t really attend school.

“She just wants to be like her peers and is a very traumatised little girl from what she’s been through. She says she wants to be an astronaut when she grows up and sometimes she says to me ‘am I ill?’. I know we haven’t got much too time left.”

Kitchen worksurface covered in bottles of medication and syringes

Erin’s daily medication

Medication is a big part of Helen and Erin’s life. As well as a Hickman line, Erin has a ‘mickey’ button where Helen syringes medicine through and feeds Erin. Ensuring she’s keeping the right medicines in the fridge, has prepared the correct doses and checking for use-by dates, not running out is ongoing.

Regular medical monitoring also means Erin’s prescribed drugs can change – so alongside frequent hospital stays if Erin becomes poorly, Helen has to learn quickly what she has to adapt.

Keeping Erin healthy and safe is vital to ensure she can live life to the full.

Blond short-haired woman wearing glasses in dark matron uniform

Matron Martina Thomas

Martina Thomas, matron in the Children’s Community Nursing Team, CADU and CNS Team at ESNEFT, said children like Erin who have complex health needs can require multiple medications to keep their conditions stable.

Martina added: “We endeavour to minimise the amount of medications that children are prescribed however in some cases polypharmacy is unavoidable. It’s important to have a discussion with your child’s clinician or pharmacist about their medicines, and to have opportunities to ask questions like what to do if your child experiences any side effects.”

She also emphasised the importance of storing medication safely at home, whether it’s multiple medications or just one. “Medicines need to kept out of reach and sight of children. When children like Erin require multiple medications throughout the day, it may be safer to have an area that’s inaccessible to the child. When preparing and administering the medication, ensure you adhere to the instructions given on the medication label and always ask either your clinician or your pharmacist if you are unsure about any of the information.” She said.

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