noahsarkhospice.org.uk Registered Charity No. 1081156

Come insideA first look around The Ark

Strictly amazingTurning your passions into cash

Winter 2018

Special daysA year of magical memoriesFeeling

the loveJess and her family share their precious moments

Message from Ru Watkins, Chief Executive

Welcome to Aboard The Ark.

We’ve had a brilliant 2018 at Noah’s Ark, supporting more children and families than ever before and getting closer to our dream of opening our brand new children’s hospice building, The Ark. It’s on schedule to open this spring, but we get a sneak preview on page 10.

During the year we have provided our unique model of care to more than 230 families, such as that of Jess, who we meet on page 6. Her mum, Liz, talks about the challenges their family has faced as well as some of the precious moments they’ve shared.

We’ve organised 45 events through our Family Activities programme this year. We know these activities are cherished by children, siblings and parents alike, and you can see for yourself the joy they bring on page 8.

The year has seen our fantastic volunteers provide 1,000 hours of home support – help with gardening, ironing and other domestic tasks, as well as playing with children and siblings. We hear about the rewards of volunteering on page 13.

There’s so much going on at Noah’s Ark – just turn the page to see at a glance all that we have achieved in a year thanks to your continued support. I truly hope you enjoy reading this issue.

Who we are… At Noah’s Ark Children’s Hospice we help families make every precious moment count. We do this by providing clinical, practical and emotional support to babies, children and young people with life-threatening or life-limiting conditions, and their families, living in North and Central London and Hertsmere.

Our new building, The Ark, opens in spring 2019, enabling us to build on our unique model of Hospice-at-Home care, while growing to support more children. The Ark will be an amazing hub for our therapies and extensive Family Activities programme. It will also accommodate overnight stays and there will be a café where families can come together for mutual support.

Twitter: @noahsarkhospice • Instagram: @noahsarkhospice2

Facebook: /noahsarkchildrenshospice • YouTube: noah.do/NoahYouTube3

Inside this issueWinter 2018

P4 A Noah’s Ark year in numbers How we use your donations and more about our work

P6 Feeling the love Jess, Anna and Liz

share their story

P8 Making magical memories A Family Activities year in pictures

P10 Building The Ark Kye and Shani take a look round

our new hospice building

P13 Day in the life of a volunteer We drop in on Jenny, Maleeha and Abdullah

P14 Strictly legal Star-spangled fundraiser

gets the lawyers dancing

P15 Bus fan’s holiday Epic trip in aid of Noah’s Ark

Find out more about us at noahsarkhospice.org.uk Address: 3 Beauchamp Court

10 Victors Way Barnet EN5 5TZ

Tel: 020 8449 8877

Email: info@noahsarkhospice.org.uk

Did you know...?

is the cost of providing Noah’s Ark charitable services this year

could keep Noah’s Ark afloat for one hour

could fund a day of care to give parents a much-needed break

could help fund a child’s session with a Specialist Play Worker

could help pay for a whole family to enjoy a special

Noah’s Ark Family Day

4

At Noah’s Ark we are incredibly proud of the work we do. From our fantastic specialist nurses and carers, to our wonderful volunteers and dedicated Fundraising Team, we’re all focussed on helping the children and families who we support, to get the care they need.

Thanks to the generosity of you – our donors, supporters, partners and friends – this is what we can do...

For more information, visit noahsarkhospice.org.uk email info@noahsarkhospice.org.uk or call us on 020 8449 8877

could help fund one-to-one Specialist Care for a

child for an entire year

5

children with life-limiting or life-threatening conditions and their families

volunteered hours of home support – offering emotional, social and practical support to family members

Supported

Provided

hours of Specialist Play and Therapies to children each month

new children and families with Noah’s Ark care and support

Noah’s Ark Family Activity events; including 8 Family Days such as the Summer Ball and annual Winter Pantomime

children with a seriously-ill brother or sister, with specially designed activities through Noah’s Ark sibling groups

email info@noahsarkhospice.org.uk or call us on 020 8449 8877

Over 12 monthsNoah’s Ark…

Supported

Reached

Provided over

Organised

For many families a visit to the panto is a winter highlight but, if your child has complex needs, theatre trips, parties or ice skating can just feel too difficult. Noah’s Ark Family Activities are all about making these treats possible – and they mean the world to the families taking part.

“We’ve got such lovely family memories from the days you’ve put on,” says Jess’s mum, Liz. “We would always prioritise them in our diaries because we know we will have a lovely day.

“It’s so hard to find things that are accessible for children like Jess. You can book standard days at theme parks, but there are so many things that Jess can’t do – because it’s not wheelchair-friendly or it’s just not geared up for her.”

Jess, who has been supported by Noah’s Ark for the past five years, has Rett syndrome, a rare genetic disorder, which results in severe disability; in Jess’s case this means very limited movement.

While Jess has periods of being relatively healthy, at

other times her frequent epileptic seizures and chest infections make family life a cycle of emergency calls and hospital admissions. Even when she’s well, Jess requires 24-hour care, which places huge demands on her family.

Jess is non-verbal and communicates by eye gaze technology. Bright, funny and quick to learn, her ability to use the technology has come on in leaps and bounds allowing her to really make herself heard.

Says Liz: “She’s hilarious; so much fun to be around – her communication with her eye gaze is just amazing. It means we know what she likes... and what she doesn’t like. If you ask too many questions about

“We’ve got such lovely family memories from the days you’ve put on in the past”

Ask nine-year-old Jess for her thoughts about Noah’s Ark and, speaking through her computer, they couldn’t be clearer: “Feel love, feel love, feel love, feel love.”

Feeling the love

Help make precious moments count - donate today Call 020 8449 8877 or visit noahsarkhospice.org.uk/donate. Thank you!6

how her day went she’ll tell you to ‘just stop’ – like any school-aged child really!”

Jess has a six-year-old sister, Anna who copes brilliantly with her sister’s condition, although Liz is aware of the stress that’s often placed upon her. “Even if you’re with Anna you’re still half listening out for Jess or thinking ‘does she need anything?’ So it’s very hard on Anna.”

To help Anna a Noah’s Ark volunteer visits fortnightly. “So many people come to the house for Jess; the carers, the physios, the

nurses. Having someone come for Anna makes her feel special and important.”

Anna has started taking part in Noah’s Ark sibling activities too. “She went to Legoland and had such a good time. Noah’s Ark is the only place that offers anything for siblings and that’s so important.

“As a family we just find Noah’s Ark totally invaluable. I don’t think we would have coped over the years, especially when Jess was so sick.”

And according to Anna: “Without Noah’s Ark, Jess wouldn’t have Specialist Carers, and I wouldn’t have met so many lovely people. I love the days out and I never want Noah’s Ark to stop. Noah’s Ark is awesome!”

“I love the days out and I never want Noah’s Ark to stop.”

Our winter appealCould you support our winter appeal to fund Noah’s Ark Family Activities? A donation today could mean precious moments for children like Jess and Anna. Visit noahsarkhospice.org.uk/donate or return the donation form on the back page.

Call 020 8449 8877 or visit noahsarkhospice.org.uk/donate. Thank you!7

Anna with Specialist Carer, Jules

Jess meets Father Christmas

Jess with carer, Theresa

Down on the farm: Temperatures soared in July as families spent a day at Willows Farm.

Having a ball: The Summer Ball is always a showstopper and this year’s didn’t disappoint, as families mingled with Disney Princesses and Harry Potter.

Making magical memories Noah’s Ark Family Activities have had a brilliant year, and certainly made the most of the summer weather. With our staff and volunteers taking care of the planning and organisation, families can relax and enjoy time together – knowing that every activity will be fully-accessible for their child. Here’s a snapshot of some of this year’s highlights...

Monkeying around: Younger children made some noise in an interactive Monkey Music session.

Sleep tight: All good sleepovers start with popcorn and a movie – our younger siblings’ one was no exception.

Pedal power: Our Penguin and Zebra groups took a spin around Arsenal stadium.

Keep up to date with all the Noah’s Ark news Follow us on Twitter & Instagram @noahsarkhospice8

Sports Day: Tottenham Hotspur’s Kyle Walker-Peters joined us for Sports Day, running the relay and awarding medals.

Thrills and spills: All three siblings groups enjoyed a holiday theme park day.

Wild day out: Our Family Day at Paradise Wildlife Park went down a treat.

Lights, camera, action: This Family Day was all about making a silent movie.

Weekend away: Siblings enjoyed three days of outdoor adventure at Woodrow High House, Buckinghamshire.

Follow us on Twitter & Instagram @noahsarkhospice9

10

We’re just a few short months away from completing our new children’s hospice building, The Ark, on schedule to open in spring 2019.

A look round Kye and her mum Shani joined us for the launch of the project in September 2017, so we brought them back for a look at the site one year on.

Shani said: “Going inside The Ark was quite overwhelming. I remember looking at the plans, right at the start of the project, then seeing the visuals. Walking into the atrium and thinking ‘I recognise this’ really was a ‘wow’ moment.

With all the hard work that’s gone into The Ark, I know it’s going to be worth the wait. I’m so looking forward to walking through the doors for the very first time.”

Building The Ark The finishing touches

Find out more at buildingtheark.org.uk Donate now to build The Ark - Text NACH10 £10 to 70070 to donate £10

11Donate now to build The Ark - Text NACH10 £10 to 70070 to donate £10

See for yourself You can watch a year of construction, condensed into just a few minutes, thanks to our time-lapse video footage at noah.do/bta-timelapse

Our green roof is in place with its 198 solar panels to generate electricity for the building. The planting scheme has been designed by international authorities on green roofs, Dr Gyongyver Kadas and Dusty Gedge. As the plants grow the roof will become part of The Ark’s beautiful outdoor space, attracting birds and pollinating insects.

The exterior of the building is now complete. It has been made watertight and all plumbing has been completed. Over the next few months we’ll continue fitting out The Ark, installing walls and ceilings, finishing off the electrics and sandblasting the atrium’s oak beams till they’re honey-coloured.

Our gardensIn the New Year we’ll begin creating the gardens, which will be integral to The Ark’s restful ambience. With the paths and hard landscaping in place we’ll plant all the trees, shrubs, grasses and flowers that make up our Contemplation, Woodland, Therapeutic and Sensory Gardens. Our Play Zones will be installed too, and the Infinity Ribbon; a fully-accessible path which flows through the grounds, bringing the different gardens together.

Michael Artemis, whose 12-year-old daughter Eli is supported by Noah’s Ark, said: “Gardens are vital for children who have physical or sensory difficulties. It’s like a huge playground for Eli’s brain and senses. The gardens are going to be a big plus for The Ark.”

12

London’s crying outA year ago we launched our appeal asking you to help us build a new children’s hospice for London. We’ve made our theme London’s Crying Out – because the The Ark is so desperately needed. There are currently more than 1,200 children with life-threatening or life-limiting conditions in our catchment area of North and Central London and Hertsmere. The Ark will enable us to grow to meet that need and to provide new services such as 24-hour end-of-life care, including for new-born babies, and post-death care from bereavement suites.

We’ll have more space for music therapy, art and sensory play as well as for Family Activities and a drop-in space for parents and carers to meet up for a coffee.

So far we have raised more than £10m from generous public and corporate donations. It’s a fantastic achievement but we still need more funds to sustain The Ark for years to come.

To find out more about volunteering visit noahsarkhospice.org.uk/volunteer or call 020 8449 8877

You can help by making a donation at noah.do/londonscrying

or text NACH10 £10 to 70070

13

A day in the life of a volunteer Jenny has been a volunteer with Noah’s Ark for five years. “Working for a local charity really appealed; especially one like Noah’s Ark that puts families at the heart of its work,” she said.

Six months ago Jenny began visiting 15-year-old Maleeha who is supported by Noah’s Ark. Both Maleeha and her brother Abdullah (eight) live with complex impairments.

“Jenny comes to us once a week for a couple of hours to spend time with our two children,” says their mum Saba. “We are so happy with Jenny; the kids have a lovely time. It’s great for us too as we get a break – a bit of time to sit and have a cup of tea.”

Says Jenny: “Maleeha loves arts and crafts and Abdullah likes to play with his cars, so we do a lot of that but we also have a bit of a chat and a laugh. One session we just looked through photo albums and Maleeha loved that.”

For Jenny the sessions are deeply rewarding, “They’re a lovely family and I feel very welcome. It’s nice to play with the children as mine are all grown up now.”

If you’re thinking of volunteering, Jenny suggests getting in touch: “There are lots of roles at Noah’s Ark and I’m sure you’ll find something that would suit. If you can’t help on a regular basis, you could do something practical like decorating or gardening. Families are so pleased because these things are often at the bottom of their to-do list.

“As a volunteer you are very well supported by Noah’s Ark – they really do value and look after us!”

“We are so happy with Jenny; the kids have a lovely time.”

“They’re a lovely family and I feel very welcome.”

noahsarkhospice.org.uk/volunteer or call 020 8449 8877

Strictly legalParalegal Lucy Bluck, had been working at law firm Kingsley Napley for a few months when she had the brainwave of a Strictly Come Dancing-inspired fundraising event.

Contact Fundraising on 020 8449 887714

She pitched the idea to head of the charities committee, Bethan Owen, who loved it. Before long a Strictly sub-committee was hard at work on the organisation, and 12 Kingsley Napley employees were perfecting their cha cha chas and paso dobles in the basement conference suite.

Lucy began dance lessons aged 11. As a teenager she was competing at national level, until stopping to concentrate on her university studies. However, ballroom and Latin have remained her great loves and her Facebook friends include some impressive dance talent.

She put out feelers and 12 experienced dancers (including Lucy) agreed to train the Kingsley Napley novices. Four months of intensive practice got underway.

On the nightTwelve couples performed before a 270-strong audience, who each voted for their favourite pair. In true Strictly style there was a panel of judges, including the show’s professional dancer Robin Windsor.

Accounts Assistant, Lewis Jenkins and his professional partner, Anastasia scooped first prize, but all the competitors were seriously impressive. “The judges said that to reach the standard displayed they would have expected the dancers to have been practising for a year,” says Lucy.

£7,500 donatedNoah’s Ark is one of Kingsley Napley’s official charities and a fantastic £7,500 has been donated from the funds raised from this ‘fab-u-lous’ event.

For Lucy it was an unforgettable experience. “It was the best fun I’ve ever had! Noah’s Ark is such an undeniably

worthwhile cause. I was really proud – of all the sub-committee’s work, in the run-up and on the night, and of everyone who took part. It made me quite emotional!”

Bus fan’s holiday Buses have always had a special place in Paul Phillips’ heart. So undertaking the 874-mile journey from John O’Groats to Land’s End by public bus, in aid of Noah’s Ark, seemed the perfect way to kick-start his retirement.“I’ve loved travelling on buses since I was a schoolboy in Tottenham, when for half a crown (12½ pence), you could buy a Red Rover ticket and travel on London buses all day long,” said Paul.

“Last year, I received my Freedom Pass, so I can travel anywhere in England free of charge. Retirement seemed the ideal

time to use the pass to its fullest extent and cover

the complete length of Britain, from the far north to the very southern tip.”

“I planned the trip for many months – timetables

were printed out and accommodation

booked.”

Paul headed for Scotland by train, ready to begin his epic trip on 2 July. After spending the night in Thurso he was off, via the towns of Elgin, Perth, Alnwick, Scarborough, Grimsby, Oakham, Aylesbury, Wotton-Under-Edge, Burnham-on-Sea, Exeter (where his wife Anne joined him), Wadebridge and Penzance, covering distances of up to 140 miles a day. On 18 July, his 65th birthday, he arrived at his destination, Land’s End.

Paul has raised more than £1,400 for Noah’s Ark through his Givey fundraising page givey.com/tijouhana_taxi which is still accepting donations.

He said: “To all those who contributed, I am really grateful. No matter how potty you may think a trip like this has been, at least some good has come of it!”

or email fundraising@noahsarkhospice.org.uk15

Contact us for help and support with your fundraising.

Visit noahsarkhospice.org.uk/fundraising for fundraising ideas and tips

or email us at fundraising@noahsarkhospice.org.uk

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