Julie Martin has just emerged from an intense media blizzard when she speaks to NR Times. It was sparked by her family’s appearance on TV land’s famous This Morning sofa.
“It’s been absolutely crazy and we’ve had an astronomical response with correspondence from all over the world,” she says.
Presenters Eamonn and Ruth were visibly moved as the tragic tale of Julie’s niece, Amy May Shead, was shared with the nation.
Amy (pictured above in therapy) used to work behind the scenes on the show as a bright, bubbly young researcher. Now, severely brain damaged following an anaphylactic shock brought on by peanut allergy, she understands everything but is unable to communicate beyond indications of “yes” and “no”.
The credits had barely rolled on the episode before Julie’s phone began glowing white hot with requests from editors and journalists across the globe.
Julie runs the Amy May Trust, which raises funds for Amy’s ongoing care and rehab in the absence of a compensation pay-out, and took hundreds of calls.
Amy’s story was subsequently relayed in every language imaginable by titles as far flung as the China Press, New Zealand Herald and Mexican Milenio.
“The overwhelming response has been one of shock at the severity of nut allergies,” says Julie. “People didn’t realise it could lead to such circumstances. On the other side of the coin are people with allergies themselves who are incredibly grateful for raising awareness. This is really important as we genuinely would hate anyone to go through what poor Amy has.”
At 26, Amy flew off for a long weekend in Budapest with her friends in 2014. On the third day she ordered a meal in a restaurant – only after following the strict regime she always did when eating out.
She verbally made staff aware of her potentially fatal nut allergy, she showed
them her allergy information card printed in their local language and received several reassurances that the chicken dish she had chosen was entirely free of nut products.
With the first bite, however, her throat tightened and she immediately went into major anaphylactic shock, leading to cardiac arrest. Two doses from the adrenaline auto-injector – or EpiPen – that she always carried with her failed to stop the reaction, although may have kept her alive.
For six minutes her brain was starved of oxygen, causing severe brain damage, and she was kept alive on a life support machine.
She spent three weeks in a Budapest hospital in an induced coma, with the depth of the coma increased three times to prevent further brain damage.
Eleven months in intensive care at St Thomas’ Hospital in London followed. She fought severe weight loss, septicaemia twice and the gastrological condition SMA brought on by her brain injury.
In 2015 she was transferred to the Royal Hospital for Neuro-disability in Putney and was later moved to a specialist care facility in Essex. Plans are currently being made for Amy to return to her parents’ home. Shockingly, public liability insurance is not a legal requirement in Hungary so no compensation was available to fund Amy’s continual rehab, despite a lengthy legal investigation.
“We have nothing but praise for the NHS as a family; they have been incredible and saved Amy’s life. But to allow her to progress, intensive treatment is needed and we have to pay for that and we understand that.”
The result is the Amy May Trust. Parties, runs and even a side-line in mail-order bags of wild flower seeds are among many things that have helped to raise funds so far.
The trust was also gifted free shirt sponsorship at Southend United, Amy’s local football club.
Julie runs the trust with her 24-year-old son Tom. As well as raising funds, it has also been lobbying for rule changes that could protect other people with nut allergies.
It launched a petition to ban nuts on airlines, and at the time of writing has almost 299,000signatures. An airline is effectively an airtight tube.
Open a bag of nuts anywhere on the vessel and dust particles are transported throughout, via the ventilation system. Serious consequences can result for anyone with an allergy. Amy’s welfare is of course Julie’s primary concern. And her niece’s positive demeanour offers hope of a brighter future.
“One of our happiest memories, which really demonstrated that Amy was aware, came when she was desperately ill at St Thomas’. Wonderful World by Louis Armstrong came on the radio.
We called this our family song and Amy was barely out of her coma but got upset. My sister and I hold this memory very dear because it had obviously triggered something in her brain that was familiar to her. It was an incredible moment.”
Julie is adamant that, despite everything the brain injury has taken from Amy, her personality remains perfectly intact.
“Amy was a vivacious, motivated and tenacious character. She also worked very hard and had a great sense of humour. She has retained these qualities. She works so hard with her therapists and never admits to being tired; she just wants to keep going.
“She has a huge sense of humour and laughs a lot. She really is happy. She also gets adult humour.”
Stimulation comes partly from a large circle of loyal friends, as well as her devoted family and parents, Roger and Sue.
“Her awareness has increased enormously over time and we know that she’s good at remembering things as she often laughs about memories she finds funny. Because her understanding is good, it’s amazing how you can muddle through even if someone can’t verbalise.”
Amy receives intensive physio and speech and language therapy – and has a weekly music therapy session.
“The therapists work intensively with her and she loves every moment of it,” says Julie. “I think the whole package of family, friends and therapists, and the constant attention that brings, really does help.
“The main therapists are very innovative in their approach and open to suggestions. We’re definitely keen to keep an open mind and try new things, as long as they are realistic options.”
Currently, Amy’s poor vision means brain computer interfaces, and their associated screens and controls, may not be the best solution to improve her communication. A specialist in America has been investigating the use of special goggles that may improve her sight. The family have also tried oxygen therapy. We will try anything that will realistically help Amy.”
A by-product of Amy’s publicity has been a massive surge in awareness of the potentially grave consequences of certain allergies.
This comes in an age in which intolerances to dairy, wheat and other foodstuffs have emerged – perhaps clouding the potentially deadly nature of allergies like Amy’s.
Figures suggest allergies of varying severity are on the rise, although there is no definitive scientific explanation of why.
Some scientists point to a rising trend of self- diagnosis and misconceptions about allergies and intolerances.
A study this year, meanwhile blamed adventurous middle class diners eating more exotic diets than previous generations.
In the UK, one to two per cent of adults have a food allergy. This, combined with the estimated five to eight per cent of children with a food allergy, equates to about two million people. This figure doesn’t include those with food intolerances.
Anaphylaxis-type reactions occur in approximately one in 1000 of the general population, while UK hospital admissions for anaphylaxis soared by 615 per cent between 1992 and 2012.
Peanut or tree nut-triggered anaphylaxis has an estimated prevalence of 0.25 to 0.95 per cent in UK and US populations (Cianferoni, 2012).
Such figures do little to portray how truly severe allergies can be, however. This is perhaps why Amy’s story so shocked the world, giving people their first real glimpse of the devastating power of certain allergies in certain people. In all of the noise and confusion that surrounds allergies, hers is a powerful cautionary tale that has made many think differently about a sometimes- trivialised issue.
Julie says: “It may be that there is some confusion between mild intolerances and serious allergies. “The media frenzy of the last few weeks can only be a good thing if it has helped people understand things better.”