'I'm on my own as far as the State is concerned' - Mum of little girl who needs 24/7 care on lack of government support
Lynn McDonald's three-year-old daughter Daisy, who lives with Rett Syndrome, requires round-the-clock care. The mum of two tells our reporter how the support of two charities allows her give both her children the care they need
Lynn McDonald's day can begin as early as 2am, when her daughter Daisy, who suffers from a rare disorder, wakes, needing urgent attention, and it rarely finishes before 11pm.
Daisy, who celebrates her fourth birthday later this month, has an extreme form of Rett Syndrome (RTT), a rare neurodevelopmental life-limiting condition, which has left this beautiful little girl unable to move, eat, speak or even use her hands.
She communicates only with her eyes, has a moderate intellectual disability, and has had to have a feeding tube inserted into her intestine because her stomach doesn't work properly. Another tube releases the air which builds up in her stomach as a result of aerophagia, which causes her to continually gulp air, resulting in a bloated, distended stomach.
Even now, her mother explains, caring for Daisy is "pretty much like caring for a newborn baby straight out of hospital."
Rett Syndrome affects girls almost exclusively, impacting on one in 10,000 births. The condition brings with it severe and multiple disabilities.
Daisy, however, has an extreme form of the condition, explains Lynn, a mother of two and former chef who says her daughter wasn't formally diagnosed until she was one-year-old.
As a newborn, Daisy looked perfectly normal, but had difficulty sucking, swallowing and even holding milk in her mouth.
"She never babbled, held up her hands, rolled over, or tried to crawl. She had absent seizures at six months - although it looks like she's day-dreaming, the brain switches off.
"She was always a floppy baby. I knew all along that things were not right," Lynn adds, explaining that Daisy is also not a typical RTT case. Typically such a child develops normally to up to 20 or even 30 months, hitting the normal milestones before regressing. Daisy never reached any milestones.
"At nine months she was like a newborn baby. She did smile, but just lay there with very little interaction. She couldn't sit, roll, lift her head, and feeding was difficult."
Sleep, recalls Lynn, a lone parent, was virtually non-existent:
"There were long screaming periods of up to 12 hours. Daisy was in a lot of pain because RTT brings extreme digestive problems."
After Daisy's diagnosis, Lynn struggled on for three more months before her father Joe alerted her to the existence of the Jack and Jill Foundation.
The organisation provides a home nursing care and respite service to children from birth to four years of age, who suffer from severe developmental delay as a result of brain damage, who may not be able to walk or talk, are tube-fed, oxygen-dependent, and in need of round-the-clock care.
Set up in 1997 by Jonathan Irwin and his wife Anne Marie O'Brien, founder of Lily O'Brien's chocolates, the foundation's work is based on the couple's own devastating experience with their son Jack, who died that year aged 22 months.
Jack and Jill operates 365 days a year, has no waiting list, and mobilises an army of some 1,000 nurses and carers around the country.
Over 20 years, and spearheaded by Jonathan's relentless fundraising, the group raised over €35million while receiving just €4.5million from the State.
It has supported over 2,000 children with a service that includes everything from financing and resourcing practical home nursing care and home visits by one of its liaison nurses, to making representations on the behalf of families to the government and HSE.
Very shortly after Lynn contacted the Jack and Jill Foundation, help arrived at the family home at Bohernabreena in Dublin in May 2014, in the form of two kind and capable nurses. Daisy was then 15-months-old.
"I was given 40 hours a month to use as needed, so I could choose a night's sleep or a few hours to go and do the shopping."
She now also had some quality time to spend with Ellie (8), her eldest daughter and a recipient of the Tallaght Under-18 Person of the Year Award for her work with her sister.
"Those 40 hours every month let me do things I couldn't otherwise do." Lynn says she can bring Ellie to the cinema or majorettes, go shopping, or even just walk the dog. "When you have a sick child and you are given the diagnosis you have to go home and get on with it - if it wasn't for Jack and Jill and the LauraLynn Children's Hospice, I'd be on my own as far as the State is concerned."
Although she does receive HSE support in the form of an on-call nurse up to three times a week, caring for Daisy is literally non-stop, she says.
"Sleep deprivation is one of the hardest things to deal with and it can take over. That's where Jack and Jill comes in. They're great; the nurses are flexible so they will come when you need them," Lynn explains. "Usually it's 11.30pm or midnight by the time I go to bed, but I cope as best I can."
The support from the Jack and Jill Foundation is a crucial buttress against the crippling demands of daily life for thousands of parents like Lynn, yet this organisation, which celebrates its 20th anniversary this year, gets less than 20pc of its budget from the HSE.
The charity, which is now planning to expand its service beyond the age of four, will be relying on public donations more than ever to keep going.
"We have to raise €3.5 million or €10,000 every single day, including Saturdays and Sundays, to finance Jack and Jill and allow us to expand the services," explains new CEO Hugo Jellett, who took up the role in early January. The organisation's core funding from the HSE is about €585,000.
"A lot of our work is a collaborative effort with the HSE. Back 20 years ago there was no help, but since then Jack and Jill's existence has put it up to the HSE that more needs to be done. Services have steadily improved," he says. "If we get a call for help from a mum or dad we can get a nurse or carer into that house by the end of the week."
* For more information visit jackandjill.ie
SUPPORT JACK & JILL
Funding is an ever-present concern for the organisation, which says every €16 donation to Jack & Jill funds one hour of home nursing care for a sick child.
The Foundation is constantly running fundraising events, such as:
• The RTÉ Concert Orchestra's Jack & Jill Foundation Charity Gala is scheduled for the National Concert Hall on February 8. This special performance of classical and popular music (tickets available fromrte.ie/co, priced from €12 to €39.50), will feature soloists Niall O'Sullivan (trumpeter) and vocalists Shóna Henneberry and Simon Morgan, who will perform a programme of film and classical favourites.
• On February 16 a series of Afternoon Tea fundraising events kicks off in The Merrion Hotel, followed by events in venues all over the country right through to November. The organisation is also seeking Lego donations from the public, which it puts on sale.
• In April, it will hold an exciting lucky bag-style exhibition and sale of 1,500 specially created postcards, (some by very famous artists) at Dublin's Solomon Gallery - termed, 'Incognito', it gives members of the public the opportunity to pick up some potentially valuable artwork at very low prices. See incognito.ie.
Health & Living