A Shropshire couple, who provide devoted round-the-clock care for their bedridden 18-year-old daughter, have chosen to raise awareness of her condition through a fundraiser with The ME Association. Their daughter has a severe form of M.E. linked to Postural Orthostatic Tachycardia Syndrome (PoTS).
Tiegan Greenwood has been sick for half her life after suffering a major intestinal bleed when she was nine. She's now been bedbound for five years, and hasn’t actually been able to leave her bed for the past 14 months. Since Tiegan became ill, she’s never been well enough to attend school for more than a few days at a time – having completely missed out on secondary school.
Her parents, Wayne and Sue, say her life has been “completely destroyed” through years of misdiagnosis, NHS failure to get to grips with her illness and the lack of any professional wanting to take responsibility for her care. They’ve even been threatened with child protection proceedings due to a failure in diagnosis and in an attempt to force Tiegan back into school.
It took years, visits to many different hospitals and innumerable consultants for the diagnoses of M.E. and PoTs to be placed in her medical records.
Wayne will be playing golf for 72 holes – four full rounds of the course – at the picturesque Hagley Golf Course in Stourbridge this June to raise money for the MEA’s research fund. Donations to his fundraiser have already shot up to well over £2,000.
He will be on the course for at least 18 hours, inviting other members and friends to join him. And this is why:
“For the last 14 months, Tiegan has been completely bedridden, unable to sit up or stand and is completely tube-fed. She suffers nausea, headaches and muscle spasms, she’s hypersensitive to light and noise and wears an eye-mask and earplugs constantly,” say the couple.
“She has low blood pressure, lack of cognitive and immune function and cannot manage her own personal care. Most days she can only communicate with one or two words, sometimes she is unable to communicate at all.
“She sleeps for approximately 20 hours a day, and her intestinal system is now struggling to digest even liquid food.”
Hospital admissions, always difficult for Tiegan because of her hypersensitivities and then made worse because of the dangers of catching covid, are still insisted on whenever her nasogastric tube needs to be replaced. The procedure, they are told, cannot be carried out in the safety of their own home.
Thankfully, since moving to a bungalow in March 2020 – ostensibly to help Tiegan get about better in her wheelchair – they've found a “brilliant” GP.
“He does visit and he’s restored our faith in the NHS a little bit”, said Wayne, who works from home for an international brand called Sealed Air, the firm which invented bubble wrap.
Sue gave up work in order to be able to provide round-the-clock care for her daughter. The couple also have a 22-year-old son, who graduated with a Masters in Physics and is currently working in Canada.
“As a little girl, our daughter was full of life, cheerful and kind with a brilliant sense of humour and a cheeky smile that would melt your heart! She grew to have a love of nature, animals, dance and gymnastics.
“In 2014, aged nine, she started to show signs of becoming unwell. She became fatigued, was frequently nauseous and suffered with stomach pains and a lack of appetite.
“One weekend, she passed out and suddenly became pale with stomach pains, We took her to hospital but, after a few hours, she was discharged being told it was just a virus. The following morning we woke to find her semi-conscious. Hospital investigations revealed she was having a major intestinal haemorrhage. Her life was saved that day and we saw the NHS at its best.
“Since then, it’s been such a rocky path. Her quality of life has been completely destroyed.
“We have been lied to, ignored and manipulated, and had to obtain legal advice at a time when all we wanted was help and support. We have spent thousands on private medical care, and currently still continue to, just to enable her to see a doctor who understands this disease.”
If you would like to support this couple’s fundraiser for M.E. research, please click on the button below:
Pictured below: Tiegan and her family in happier times