Help raise funds for the charity that saved my daughter’s life

Mum Jayne recently with daughter Ariana who is doing amazing
Mum Jayne recently with daughter Ariana who is doing amazing

TinyLife, Northern Ireland’s premature baby charity is heading to Cuilcagh Boardwalk this May with a special guided trail along the scenic loop.

And a Ballygawley mum is calling on the local community to join the sponsored walk and help raise money for the charity that saved her daughter.

TinyLife was there for Jayne and Adrian Farmer, when daughter Ariana was born premature

TinyLife was there for Jayne and Adrian Farmer, when daughter Ariana was born premature

TinyLife was there for Jayne Farmer, when daughter Ariana was born on December 2 2016 in Craigavon Area Hospital in Portadown, weighing just 3lb 2oz. At 29 + 2 days. Little Ariana spent the next six months in hospital due to congenital Myotonic Dystrophy.

Jayne explained: “Ariana was born prematurely because of Myotonic Dystrophy. We have since discovered that my dad carries the gene and that I had early onset between 18 and 19. The prevalence increases as it progresses through the family, so Ariana developed the congenital condition from birth.

“Resuscitated at birth, Ariana’s breathing was restricted meaning she had to be ventilated in hospital. Expressed milk was used for tube feeding; a milk pump was just one of the many services TinyLife offered. I had free usage for 6 months and found this invaluable.

“I also donated milk to the Milk Bank. This is a wonderfulservice, which is crying out for donations. I didn’t know about this before having Ariana and I suspect many other mums out there won’t know either.

“Janice and Catherine, two of TinyLife’s Family Support Officers were both brilliant. They helped with all the practicalities and through Catherine I met Ailish, my TinyLife volunteer. Ailish helped when I couldn’t cope, when I needed a break, a bath, a rest, a chat. She knew just when to step in and I felt totally at ease, knowing Ariana was in safe hands. To this day, Ailish still visits every Friday.

“Due to her condition, Ariana has low muscle tone and is still tube fed. This can be a laborious process lasting up to an hour for each feed so it’s great to have that additional help.

“So needless to say, I was delighted to help promote the Tiny Life Cuilcagh Boardwalk event this month. My husband Adrian, will also raise funds for both Myotonic

Dystrophy and TinyLife, between August 5 to 10, when he takes part in the Nick Hastings Memorial Cup hosted by Mid Ulster Squash. I will never forget how TinyLife helped me – they still do. I would urge families with premature babies to reach out for the help that is there.”

Cuilcagh Mountain and boardwalk are part of the Marble Arch Caves UNESCO Global Geopark and are internationally renowned as an area of outstanding natural beauty.

This sponsored guided walk will take place on Sunday, May 12. The linear route is 7.5 miles long there and back and weaves through one of the Northern Ireland’s largest expanses of blanket bog, crossing farm tracks, boardwalk and mountain path.

The walk is restricted to the boardwalk for conservation reasons, hence the UNESCO status. A final steep climb reaches the 666-metre summit of Cuilcagh Mountain.

Expedition leader Martin McMullan from One Great Adventure explained: “This walk is hailed as the Stairway to Heaven and it certainly boasts stunning vistas on route. “At 4km and a grade 5, it is suitable for moderate to active participation but due to terrain and elevation, it is not suitable for wheelchairs or prams and from a conservation perspective, dogs are not permitted.”

TinyLife’s Head of Fundraising and Communications, Val Cromie added: “Over 2000 babies are born too soon, too small or too sick in Northern Ireland each

year. Some arrive as early as 24 weeks, weighing as little as 1lb/454 grams, the same weight as half a bag of sugar!

“At this understandably very stressful time for parents, TinyLife is there to provide practical advice, emotional support and to give a helping hand to families who have a baby in a neonatal intensive care unit. With our network of Family Support professionals in every neonatal unit across Northern Ireland, we ensure parents receive optimum support in hospital, at home and within the community. As a small local charity, every penny raised through our events helps the six families locally, affected by prematurity every day.”

A flat fee of £50 with no sponsorship or a registration fee of £25 with a minimum sponsorship of £75 will secure your place on this event. The minimum age for taking part is 12+ with adult accompaniment with those under 16.

Book now – contact Valerie@tinylife.org.uk telephone reception (9am – 5pm Mon-Fri) +44 (0) 289 9081 5050 or securely go online – www.buytickets.at/tinylife

Why not visit Tinylife.org.uk and find out about other events, volunteering opportunities and the latest news from TinyLife.