ALDER HEY CHILDREN'S CHARITY INSPIRED MAGAZINE #5

Inside Inspired...

3

Welcome to our newest young fundraising ambassadors

4

Thank you to all our amazing supporters

6

Do something remarkable and support vital research at Alder Hey

8

Charity brings Hybrid Operating Theatre to Alder Hey

9

Revolutionising Patient Care

10 Did you

#GetYourStripes?

12

Val’s Legacy

13

How your fundraising has made a difference!

14

Alfred’s story

16

Looking back at 2016

18

Ben’s story

19

Remarkable Challenges

25 Our Amazing

Volunteers

26 A Grand Challenge 28 Spotlight on Schools 30 Dylan’s story

A big

Hello

& welcome to Inspired

from our Young Fundraising Ambassador Dylan Logan

“My name is Dylan Logan and I am 17 years old. I am currently doing an apprenticeship programme to become a fitter. I first got involved with Alder Hey due to my brother being a diabetic. My mum and brother were asked whether any siblings would be interested in taking part in a research trial that was about to begin. I was asked to participate in the study that could possibly help in slowing down or even preventing the onset of diabetes.

I was screened and it showed the possibility of me developing diabetes in the future. This led to me wanting to participate even more in the research. It was always my decision whether I wanted to take part or not.

The study involves me taking oral medicine, which is taken to hopefully prevent or slow down the onset of diabetes.

The medicine is taken once a day in the morning.

Alder Hey has always been great to me, even more so once I began the trial.

Every six months I have to go to Alder Hey in order to have a check-up to see if the diabetes has progressed any further, or whether the medicine is having any effect.

I was also asked by Alder Hey Children’s Charity to take part in their marketing campaign, which was great!

This involved me writing a story about what I have been through and my experiences with Alder Hey. My story appeared on a radio advert and I had my photo on one of their leaflets too.

This resulted in me going to London to represent Alder Hey and to promote the good work that they do.”

Read Dylan’s Story on page 30.

WELCOME TO OUR NEWEST YOUNG FUNDRAISING AMBASSADORS

B E N PA R R Y

JAMES AND G E O R G E M AT H I A S

AWARD FOR HUZAIFAH!

SAOIRSE HENDERSON

Congratulations to our Young Fundraising Ambassador Huzaifah Valli who recently received The Diana Award. This special award is given out in Diana, Princess of Wales’ name to young role models who are selflessly transforming the lives of others. Well done Huzaifah!

Welcome to our newest young fundraising ambassadors 3

A huge thank you to all of our remarkable supporters. We continue to be amazed by your generosity and the efforts you put in to fundraise for Alder Hey. Please keep your fundraising exploits and photos coming - we love to see and hear what you’ve been up to. Here’s just a selection...

Fleur Powell-Roberts held a 70’s & 80’s night at her local village hall and raised a huge £2,270.

Darcy Morris Somers donated an incredible £600 in lieu of gifts at her christening.

The Emblem Lodge Freemasons in Blackpool raised £1,233 bringing their total for this year to a magnificent £3,363.

Team Isaac teamed up with Leigh Centurions RLFC who donated proceeds from their special edition Summer Bash Shirts and raised an amazing £3,380.

4 Thank you to all our amazing supporters

THANK

AMAZING

The Sure Group raised a superb £12,073 by holding a golf tournament.

Angela Ellis has been supporting Alder Hey in support of her son Ryan for a number of years and has raised a massive £5,615 through collection boxes, an abseil and Oli’s Safari Walk.

The Home Service Force Royal Artillery completed their annual charity walk raising £1,230. They have raised over £13,000 for Alder Hey to date.

YOU

TO ALL

OUR

SUPPORTERS

Darren Stretch organised a football match in support of his daughter Lily and raised a phenomenal £1,965.

The staff at Autism Together sponsored David Taylor who wrote and performed his own play, raising a fantastic £57.

Africa and Angus McQueen raised a brilliant £500 by selling their old toys and baby equipment.

Smyths Toys donated a tremendous £5,000 raised from the plastic bag levy in their English stores.

Sophie Bayliss held a bonfire party and raised a sparkling £700.

The Rotary Club of Garston teamed up with their Australian counterparts at Victor Harbor and donated a fabulous £24,000.

The Ringway Circle 224 Catenian Association donated £1,730.

Eva Brady raised an incredible £287 by donating money given to her on her 5th birthday.

Thank you to all our amazing supporters 5

DO SOMETHING REMARKABLE AND

S U P P O R T V I TA L R E S E A R C H AT ALDER HEY Alder Hey Children’s Charity has launched a new charity campaign to raise £6m for remarkable research. The new campaign aims to raise vital funds towards the second phase of Alder Hey’s ‘Institute in the Park’, a dedicated research, innovation and education centre.

The unique Institute in the Park is home says Clare White, Chief Executive of Alder to clinicians, healthcare professionals and Hey Children’s Charity. “With our generous scientists, all working together in partnership corporate and community supporters we have with young patients and their families to already created a remarkable new hospital for produce remarkable life-saving and lifeour patients and families. Contributors to this changing results. Located next door to the appeal will leave a legacy in the form of the new Alder Hey Children’s Hospital, the facility next generation of treatments and medicines allows researchers and clinicians to work with for sick children both at Alder Hey and all industries to develop safer, better medicines around the world.” and therapies for children.

Vital research takes place at Alder Hey The Charity’s £6m Appeal will help Alder Hey to extend the current building and create more space to develop even better treatments for children and young people.

“This new appeal is all about improving the health of children everywhere by creating a unique facility solely focussing on children’s research,”

6 Do something remarkable and support vital research at Alder Hey

“This new appeal is all about improving the health of children everywhere by creating a unique facility solely focussing on children’s research.”

Young Fundraising Ambassadors launch our new Appeal

WHAT YOUR MONEY COULD BUY £3 a month could help provide childcare for the siblings of our patients taking part in clinical trials to develop better and safer new medicines.

Ambassador Lily Whitehead with her mum Jane

£10 a month could help fund essential distraction equipment to help patients cope with invasive procedures as part of their participation in a clinical trial. £20 a month could assist our scientist’s research to develop a faster test for blood poisoning, which could enable us to detect this deadly infection much earlier. £50 a month could help support our development of a brand new research centre, which will enable us to develop better and safer medicines to help even more patients.

How you can help?

Do something remarkable today and donate to Alder Hey Children’s Charity to support remarkable research at Alder Hey. Go to www.alderheycharity.org to find out more!

Do something remarkable and support vital research at Alder Hey 7

Charity Brings Hybrid Operating Theatre to Alder Hey Alder Hey Children’s Charity has funded a revolutionary theatre facility that combines imaging technology and surgical equipment to enable complex surgery on children.

Clare White from Alder Hey Children’s Charity said: “We are incredibly grateful to all our donors, particularly to David and Maureen Speakman who gave over £600,000 towards this facility. We are very lucky to have some of the best surgeons at Alder Hey and now they have world class theatres to match.”

The specially designed hybrid operating theatre cost over £1.2m and is the first of its kind in the UK. The facility is a one room solution, containing all the high tech equipment and software required to perform complex diagnosis and surgery in the best possible environment. It will be used to treat around 200 children every year for a variety of serious conditions including those requiring complex heart and brain surgery, spinal operations and life-saving emergency care.

The hybrid theatre is the only multi-speciality facility in the country.

Benedetta Pettorini, Alder Hey Neurosurgeon explains: “As a surgeon this is the 8 Hybrid Operating Theatre

best possible operating environment I could ask for. Here at Alder Hey we are at the cutting edge of paediatric care. This hybrid theatre will allow us to provide the highest levels of care to children who have very complex conditions and require very delicate scanning procedures and extremely precise surgery.

State of the art surgical equipment, the very latest technology and imaging software, together with an operating table specifically designed to be suitable for a variety of procedures and surgical techniques could potentially save lives and reduce risks of further injuries or complications.”

22 month old Felicity Dawe was the first neurosurgical patient to use the facility.

She required a scan ahead of complex surgery to correct a severe deformity in her neck.

Alder Hey clinicians used the facility’s specialist halo monitoring equipment when performing her scan, greatly reducing risk of paralysis for a patient with her condition.

REVOLUTIONISING PATIENT CARE WORK HAS BEGUN AT ALDER HEY TO CREATE A DIGITAL APP THAT WILL TOTALLY TRANSFORM THE EXPERIENCE OF CHILDREN IN HOSPITAL. Thanks to the support of one of the worlds favorite online retailers Shop Direct, who raised a phenomenal £249,000 for the project, development of the app was able to begin in 2016. Shop Direct have also provided valuable advice on the app’s design and development.

“Alder Hey, like Shop Direct, is always trying to innovate and do things differently,” Iain Hennessey, Paediatric Surgeon and Alder Hey’s Clinical Director of Innovation explains.

“Together, we have been exploring how we can apply Shop Direct’s digital retail expertise to the hospital environment to create our own ‘shop front’. We have really benefitted from their expert advice, as well as their incredibly generous donation which has enabled us to make this project a reality.”

The app is set to include a digital map enabling patients to explore and familiarise themselves with the hospital before their visit. They will be able to find out everything they need to know before their visit, from where to park, to what to pack and what their room will look like. The app will also feature gaming and augmented reality, providing entertainment but also much needed distraction for patients having procedures. The first phase of the app is expected to launch in 2017.

Alder Hey Children’s Charity is continuing to raise funds for further development.

In October, Liverpool John Lennon Airport (LJLA) announced a major fundraising drive to support the project.

Using their expertise, Alder Hey will be able to enhance the experience of patients and families, supporting them on their journey through care by helping them to be better informed, calmer and entertained. LJLA’s knowledge of achieving efficient passenger flow through the airport will also enable Alder Hey to effectively manage patient flow through the hospital.

“The journeys that our patients and their families go on at Alder Hey are very different to the journeys embarked upon from LJLA, but many of the principles are the same,” Iain continues. “We’re hugely grateful to LJLA for their support and fundraising and are looking forward to embarking upon this exciting journey with them.”

Revolutionising Patient Care 9

DID YOU

IN PARTNERSHIP WITH Alesha Dixon with Lily

All the money raised will be used to support world leading research, education and innovation at Alder Hey. “Now in its third year, I am incredibly proud of our partnership with Alder Hey Children’s Charity which has seen us raise over £1.5m for this amazing cause,” Jason Hargreaves, CEO of Matalan said.

Matalan continued their amazing support for Alder Hey Children’s Charity in 2016 with another successful Christmas retail campaign!

Families from all over the UK joined a host of celebrities in supporting the hugely successful #GetYourStripes campaign for Alder Hey. This was the third major fundraising drive by Matalan for Alder Hey, following the success of the previous Alphabet Scarves and Beanie Vs Bobble campaigns. The campaign took Matalan’s phenomenal total to over £1.5m.

10 Did you #GetYourStripes?

“The work the Charity is doing is so important and the partnership allows us to be part of something truly special.

Family is at the heart of our business so to be able to support such a worthy cause is an honour!”

Archie Veale with his dad

?

FOR ALDER HEY

#GetYourStripes celebrated festive family downtime with a range of red, green and white stripey pyjamas, mugs and socks available to buy.

Mums, dads, brothers, sisters and even pets all got involved, with 100% of the profit donated to Alder Hey Children’s Charity.

Anna Friel with her daughter

PJ PART Y!

George and Larry Lamb

To celebrate the success of the #GetYourStripes campaign, Alder Hey also held a PJ party in the Atrium of the hospital.

Patients and staff were encouraged to wear their stripes and show their support. The celebrations included a surprise live performance by popstar Alesha Dixon who also brought a smile to kids and families during a special visit to one of our wards.

Alesha with Saoirse Henderson

Our Charity team

Did you #GetYourStripes? 11

VA L’ S L E G A C Y

BRINGING JOY TO FUTURE GENERATIONS OF CHILDREN LOCAL RESIDENT DES GRIFFITHS RECENTLY DISCOVERED HOW HIS WIFE’S LEGACY GIFT HAS MADE A DIFFERENCE TO YOUNG PATIENTS AT ALDER HEY

When Des’ wife Val sadly passed away in 1999 she left behind a diamond ring which was sold at her request to Boodles jewellers in Liverpool for £26,500.

Before her death, Val had asked her husband to donate the money from the sale to Alder Hey Children’s Charity, where it has been used to fund revolutionary aquaponics systems within the new hospital.

Aquaponics is a specially designed eco-system involving fish and various plants and herbs. Water from the fish tank is used to feed plants and herbs above it while the plants naturally clean and filter the water before feeding it back into the tank in an endless cycle.

Thanks to Val’s generosity, three wards in Alder Hey now have their own aquaponics system on their outside play decks overlooking Springfield Park.

Patients have been enjoying feeding the fish as well as learning how the mini-eco system works. Some of the herbs have even been picked 12 Val’s Legacy

and used by the hospital’s dedicated ward chefs.

Val’s husband Des recently visited Alder Hey with his family to see the aquaponics system in use and was extremely impressed with how his wife’s legacy has been used to bring smiles to hospital patients. “It really is fantastic to see where the money has gone,” Des explained during his visit. “The aquaponics systems are incredible and I’m sure Val would be so proud to see that her money is making a huge difference to the children and families here.”

Des and his late wife Val

Louise Barrett, Alder Hey Children’s Charity said: “It was so lovely to meet Des, show him around our new hospital and give him an opportunity to see the aquaponics systems in use.

Val’s legacy is making a massive impact and we are incredibly grateful to both her and Des for their incredible donation. This is a fantastic example of how legacy gifts can help future generations of children and we feel humbled by their generosity.”

If you would like more information on how you can leave something in your will, please contact John Armstrong in the Charity team either by telephoning 0151 293 3678 or by email john.armstrong@ alderheycharity.org

DO YOU HAVE A WILL IN PLACE?

Weightmans solicitors can help advise when writing a new will, or editing your current one.

The service is tailored to your specific needs, and the national team will provide a 10% discount to friends and supporters of Alder Hey. Contact Shahida Jogi on 0151 243 9540, at shahida.jogi@weightmans.com or visit www.weightmans.com for further information.

HOW YOUR FUNDRAISING HAS MADE A DIFFERENCE! Every donation made Children’s to Alder Hey Charity enables us to improve the lives of our patients and their families by providing specialist equipment, enhancing facilities at the hospital and funding vital research into childhood diseases and the safety of medicines for children. Thank you for your support!

£2,000 to ensure continuation of the Greenspace Horticultural Therapy project. £5,900 for a Hirschsprung’s disease research study. £4,710 for 10 televisions with built in DVD players for the Intensive Care Unit. £1,500 to develop an app to help children with sickle cell manage their condition. £89,000 for minimally invasive endoscopic surgery equipment for children diagnosed with brain tumours and other central nervous system anomalies.

Here are just some of the ways YOU have made a difference

£11,939 for a scanner to provide optimal bladder scans for children. £11,930 for a cell imaging system to support research projects into juvenile lupus, childhood arthritis, respiratory disease and childhood leukaemia. £20,000 to maintain a 3D printing facility within Alder Hey’s Innovation Hub to print anatomical models from MRI and CT scans. These are used by surgeons to improve clinical outcomes and efficiencies. £9,990 to provide four music residencies in key areas of the hospital including Neuro Rehabilitation, Oncology and the Dewi Jones Unit. £34,764 funding for an Arts Co-ordinator. £17,000 for an OCT machine to diagnose, assess, monitor and document treatment for young patients with eye conditions. £5,000 for 100 ‘MiniBoo’ comforters and baby nests for the Neonatal Unit to enhance bonding.

£1,755 to buy an advanced surgical headlamp to provide better optics for surgeons when operating on small babies with complex problems. £7,000 to fund a therapeutic weekend break for bereaved families. £1,000 to design a comic book for patients with cerebral palsy undergoing Selective Dorsal Rhizotomy. £4,800 for children to attend a burns camp. £2,027,622 towards building the new Institute in the Park.

T hank you!

How your fundraising has made a difference! 13

ALFRED’S STORY

ALFRED MIDDLETON IS 10 YEARS OLD AND HAS LIVED WITH SEVERE ASTHMA SINCE BIRTH.

On average there are three children with asthma in every classroom in the UK. Many people underestimate how serious the condition is.

14 Alfred’s story

Mum Sallyanne explains how Alfred is helping Alder Hey doctors to treat children with this condition by taking part in a research trial.

“Living with asthma is often hard for Alfred. He can find it difficult to exercise or socialise with his friends and his younger brother Adam. His asthma can be triggered by coming into contact with pets, cut grass and dust. His chest can get tight and he can have trouble sleeping at night,” mum Sallyanne says.

“We’re just thankful that there’s a research study at Alder Hey which could help us to take a step closer in improving my son’s quality of life.”

“In addition to his severe asthma, Alfred also has eosinophilic esophagitis which is an allergy and immune based condition and means he is unable to eat without the help of a tube.

“When the research team at Alder Hey approached us to participate in a research study, we jumped at the chance.

“The doctors at Alder Hey took the time to explain about the trial and what it entailed. They told Alfred that the study was taking part in two sections and that at any time he would be able to pull out if he wasn’t comfortable continuing, but he’s already signed up to the second part. Alfred is very clued up on his health.”

“Alfred’s condition stops him from visiting friends and family so as a family we’re hoping the research study can help find a solution. We’re hoping that the study helps towards reducing the amount of steroids and other medications Alfred has to take. We’re just thankful that there’s a research study at Alder Hey which could help us to take a step closer in improving my son’s quality of life.”

Despite many setbacks, Alfred is a happy and kind boy who is always looking on the bright side of life. “I’m really hoping it helps me,” the 10 year old says. “But if it doesn’t, it might help other kids.”

SUPPORT REMARKABLE RESEARCH AT ALDER HEY visit: www.alderheycharity.org

Alfred’s story 15

LO OKING BACK AT 2016 marked Alder Hey’s first full year in our new home!

We look back on a memorable 12 months which included the hospital’s official opening by Her Majesty the Queen, the launch of a new charity appeal, advances in innovation and a visit from Mr Tumble!

JANUARY

2016 M AY

• Charity launches new Fundraising Appeal (see page 6) • Alder Hey announces they will become the UK’s first cognitive hospital

• Fundraisers abseil in Liverpool Anglican Cathedral

JUNE

• The Queen officially opens Alder Hey in the Park (see opposite)

MARCH

• Institute in the Park is officially opened Photo by: Andy Teebay (Liverpool Echo)

• Wayne Rooney testimonial raises over £1.7m for children charities including Alder Hey SEPTEMBER

FEBRUARY

• Matalan donate £600,000 to Alder Hey

AUGUST

• 3D model used in theatre for first time

APRIL

• Grand National jockeys visit Alder Hey 16 Looking back at 2016

• Alder Hey host FutureFest16 - a two day event to come up with new ideas in child healthcare OCTOBER

J U LY

• Fundraisers take part in the Coniston Challenge

• Shop Direct donate £249,000 to Alder Hey • Matalan launch their #GetYourStripes campaign for Alder Hey (see page 10)

NOVEMBER

• CBBC’s Operation Ouch Hospital Takeover at Alder Hey • #GetYourStripes PJ Party at Alder Hey

• Alder Hey and the newly opened Al Jalila Children’s Hospital in Dubai sign an official agreement to help enhance children’s healthcare across the world.

• Charity secures £1.4m funding for Bereavement Support Centre at Alder Hey Hospital DECEMBER

• CBBC live at Alder Hey (see opposite)

• Everton and Liverpool FC visit Alder Hey

BBC CHILDREN’S LIVE AT ALDER HEY

ALDER HEY PATIENTS WERE GIVEN AN EXTRA SPECIAL CHRISTMAS SURPRISE WHEN ALL THEIR FAVOURITE CBEEBIES AND CBBC CHARACTERS VISITED THE HOSPITAL ON A VERY SPECIAL DAY.

Alder Hey hosted a live broadcast for CBeebies and CBBC on 1st December 2016.

Many stars of children’s TV were there to light up the faces of families and staff.

They included twins Dr Chris and Dr Xand Van Tulleken of Operation Ouch (filmed at Alder Hey), Dr Ranj, Melody, Lauren, Karim, Cel, Ben, Cerrie, Kalie, Millie and of course our favourites Dodge and Hacker T Dog. Even Mr Tumble made an appearance!

The broadcast co-incided with Alder Hey’s official Christmas light switch on event. Operation Ouch doctors Chris and Xand joined patients Abigail and Lily to turn on the Christmas tree lights live on CBBC.

ROYAL OPENING FOR ALDER HEY IN THE PARK

ALDER HEY IN THE PARK WAS OFFICIALLY OPENED BY HER MAJESTY THE QUEEN DURING AN HISTORIC AND UNFORGETTABLE DAY IN JUNE.

Hundreds of well-wishers including Alder Hey patients, families and staff gathered outside the hospital entrance and waved Union Jack flags to welcome the Queen and the Duke of Edinburgh to the new Alder Hey. The Royal Party were given a tour of the hospital by Alder Hey Chair Sir David Henshaw and Chief Executive Louise Shepherd.

Watched by hundreds of staff, patients, families and supporters of the hospital, the Queen unveiled a plaque to officially open Alder Hey in the Park.

Looking back at 2016 17

BEN’S STORY Seven year old Ben Parry is one of Alder Hey Children Charity’s newest young fundraising ambassadors. Ben and his family have already raised over £20,000 for Alder Hey Children’s Charity.

Here Ben’s mum Laura explains why.

“From May 2014 Ben’s motor skills began deteriorating. He was constantly falling over, he developed a tremor on his left side and his personality also changed,” mum Laura says.

An MRI scan at Alder Hey in January 2015 showed he had a mid-brain tumour and hydrocephalus.

“That night he was operated on to release the pressure from his brain,” remembers Laura.

“The following Thursday, Ben had his brain tumour operation and he was in theatre from 9am until 7.30pm. The surgeon successfully cut out his tumour and we were delighted that the pathologist told us it was a low grade pilocytic astrocytoma.”

“Thanks to the staff at Alder Hey, we have now been given our family back” Radiologists at Alder Hey were able to scan Ben during surgery using the hospital’s 3-T intra-operative MRI facility. High resolution imaging, combined with state of the art navigation enables surgeons to remove tumours precisely and safely.

18 Ben’s story

“Thanks to the staff at Alder Hey, we have now been given our family back,” continues Laura.

“When we realised that the intra-operative scanner was paid for by the Charity. We decided that the clear way for us to thank the hospital was to raise as much money as possible.

“Ben has taken an active role in raising funds, organising an Easter raffle and football tournament in school. He also gave a short speech at our charity night. Ben is our hero!”

Ben still has left sided ataxia but after having lots of occupational therapy, physio and hydrotherapy, his family have already noticed a marked improvement.

“Our family still has scars from our experiences but they are outweighed by our feeling of being so lucky and blessed,” Laura says. “Ben has MRI scans every six months which will continue for a further two years with only a very slight chance of recurrence.

“We live scan to scan but we have as much family time and fun as possible. We are so grateful to Alder Hey and we remain so proud of Ben and all we have overcome.”

REMARKABLE CHALLENGES WE LOVE TO HEAR ABOUT THE REMARKABLE CHALLENGES T H AT O U R S U P P O R T E R S U N D E R TA K E I N S U P P O R T O F C H I L D R E N AT A L D E R H E Y. W H E T H E R I T ’S J O I N I N G I N WITH ONE OF OUR BESPOKE CHARIT Y CHALLENGE EVENTS, E N T E R I N G A N E V E N T, O R C R E AT I N G YO U R O W N U N I Q U E AND INSPIRING CHALLENGE, TA K I N G YO U R S E L F O U T O F YO U R C O M F O R T Z O N E C A N R E A L LY M A K E A D I F F E R E N C E TO T H E L I V E S OF THE CHILDREN AND THEIR FA M I L I E S AT A L D E R H E Y.

Oli meets Osain and friends

AMAZING OSAIN CLIMBS SNOWDEN JUST 12 WEEKS AFTER LIFE-SAVING BRAIN SURGERY

After being diagnosed with a brain tumour following a visit to his local opticians, 16 year old Osain Jones was transferred to Alder Hey via Ysbyty Gwynedd and operated on immediately.

Osain’s recovery was remarkable. Just three weeks after having a major operation he completed his GCSE’s. Nine weeks later, Osain celebrated his amazing recovery by walking up Snowdon with 15 of his family and close friends!

The group was joined by Alder Hey Children’s Charity mascot Oli the Elephant, who saw them off in Llanberis and welcomed them all at the summit.

Our brand new fully branded challenge t-shirts have now landed! These fabulous technical t-shirts cannot be bought in any shop and can only be acquired by signing up for a challenge in aid of Alder Hey. To join our challenge team or for information or advice on any of our challenges please contact the Charity office on 0151 252 5716 or email community@alderheycharity.org

Osain said: “It was a great day, I really enjoyed the walk up Snowdon, made even better by having my family and friends there to support me.”

Osain’s mother, Rhian said: “We are so very grateful to Alder Hey for saving our sons’ life. Osain wanted to repay them in a small way. The best thing about the walk up Snowdon, was seeing our son walking alongside us, only 12 weeks after such a huge operation.”

Osain and his friends have many other events planned including a skydive with his sister Alaw, and family friend Tomos Glyn. To date Osain has raised an incredible £5,000. Well done Osain!

Remarkable Challenges 19

MAGIC MOLLY SKYDIVES FOR LITTLE BROTHER BILLY Three days before Christmas 2015, Molly McDonnell’s little brother Billy was diagnosed with a rare brain cancer, Choroid Plexus Carcinoma.

By the age of one Billy had undergone three brain surgeries, four MRI scans, several anaesthetics, five rounds of chemotherapy and 10 transfusions at Alder Hey. To support her little brother and to thank the hospital for the care he receives, 16 year old Molly decided to raise money by jumping out of a plane at 10,000ft and raising over £2,000 in the process.

“It was an amazing experience and for a worthwhile cause which made it even better,” Molly said. “I definitely want to do another!” Thanks Molly!

LITTLE LEGS INTO SPACE!

PINARELLO BIKERS

Carl Wilson is a man on a mission!

No stranger to pushing the boundaries of his comfort zone, Carl likes to create his own personalised extreme challenges to raise vital funds for Alder Hey. In 2015, Carl, nicknamed ‘Little Legs’, completed 100 miles, without rest, on a treadmill at Liverpool Lime Street Station.

In May, four North West businessmen - Sambro’s Nikki Samuels, Bobby Arora, owner of B&M, Simon Showman from Ultimate Products and Naresh Abrol from Union Property, completed an arduous 600km cycle from Perpignan to Antibes. The cyclists, dubbed ‘The Pinarello Bikers’, completed the challenge in five days and raised an incredible £264,001 for Alder Hey Children’s Charity.

To go one better in 2016, Carl decided to undertake another epic challenge. This time it was a 62,000ft climb in a 24 hour ‘Race to the Edge of Space’.

The money raised will be used to buy much needed neurosurgery equipment at Alder Hey.

Using a Jacob’s Ladder climbing machine, Carl climbed a total of 66,000ft in 23 hours and 40 minutes – the equivalent of 20km or climbing into space!

To date, Carl has raised over £12,000 for Alder Hey. We can’t wait to hear what he comes up with for 2017!

20 Remarkable Challenges

On handing over the cheque, the team also met Ms Benedetta Pettorini (left), one of the Consultant Neurosurgeons at Alder Hey. Benedetta is one of the surgeons who will be using the new equipment purchased with the donation and who is also leading a research project to help make surgery even safer and less invasive for young patients.

Bobby Arora on behalf of all the Pinarello Bikers said: “None of us had ever done any serious cycling before, so doing over 600km in five days was a big challenge and some days were really hard. However this is nothing compared to the dedication of all the staff and volunteers at Alder Hey and Alder Hey Children’s Charity.”

RUN WITH US WHETHER YOUR GOAL IS COUCH TO 5K OR THE LONDON MARATHON, RUNNING FOR ALDER HEY WILL GIVE YOU ADDITIONAL MOTIVATION AND YOU’LL LOOK FANTASTIC IN ONE OF OUR NEW RUNNING VESTS! SOME OF THE MOST POPULAR RUNNING EVENTS ARE DETAILED BELOW.

APRIL

SEPTEMBER

LIVERPOOL HALF MARATHON Sunday 2nd April

GREAT NORTH RUN (NEWCASTLE, HALF MARATHON) Sunday 10th September

LONDON MARATHON Sunday 23rd April

ENGLISH HALF MARATHON (WARRINGTON) Sunday 17th September

MAY

OCTOBER

CHESTER HALF MARATHON Sunday 21st May LIVERPOOL ROCK & ROLL MARATHON AND HALF MARATHON Sunday 28th May

CHESTER MARATHON Sunday 8th October

GREAT MANCHESTER RUN (HALF MARATHON & 10K) Sunday 28th May AUGUST NORTH WEST TRIATHLON (NANTWICH) Sunday 13th August TO JOIN THE ALDER HEY RUNNING TEAM SIMPLY ENTER ANY EVENT OF YOUR CHOICE AND CONTACT US FOR YOUR FUNDRAISING PACK AND RUNNING VEST

t: 0151 252 5716

e: community@alderheycharity.org

Remarkable Challenges 21

IF YOU WOULD LIKE ANY INFORMATION ABOUT OUR EVENTS visit: www.alderheycharity.org or email: community@alderheycharity.org

THE CONISTON CHALLENGE SATURDAY 8TH JULY • CONISTON, LAKE DISTRICT A TEAM TRIATHLON IN THE BEAUTIFUL LAKE DISTRICT.

Trek the Old Man of Coniston (approx. 10km), kayak across Coniston Water (3km) and mountain bike through Grizedale Forest (17km).

Teams of 4 or 6 people.

REGISTRATION FEE: £50 per team

MINIMUM SPONSORSHIP: £1,500 per team

LIVERPOOL

NIGHTRIDER SATURDAY 15/16TH JULY Join our team of cyclists on this exciting night cycle through Liverpool and the Wirral.

Choose between a 50km or 100km route REGISTRATION FEE: £39 MINIMUM SPONSORSHIP: £200

Register for the Alder Hey Nightrider team at www.nightrider.org.uk 22 Remarkable Challenges

LIVERPOOL CATHEDRAL ABSEIL SATURDAY 5TH AUGUST Abseiling 150ft down Liverpool’s world famous cathedral is a magical experience.

Why not make this one of your 2017 challenges?

REGISTRATION FEE: £35 MINIMUM SPONSORSHIP: £165

DO YOU DARE TO

SKYDIVE?

JUMP FOR F R E E!

FEELING BRAVE? TAKE ON THE OUR MOST EXHILARATING CHALLENGE

BY JUMPING OUT OF A PLANE FOR ALDER HEY.

Skyline have sites located around the country offering the chance to try either a Tandem or Static Line jump with availability throughout the year.

MINIMUM SPONSORSHIP: £395

Remarkable Challenges 23

A LT E R N AT I V E ASCOT

TICKETS £45 PER PERSON

THURSDAY 22ND JUNE 2016

AINTREE RACECOURSE, GOLDEN MILLER SUITE 12.30PM The racing social event for all those ladies who can’t make the trip to Royal Ascot.

Tickets include a two course lunch and complimentary drink, live entertainment, disco and full afternoon tea.

To book your place call Helen on 0151 252 5364 or email helen.hughes@alderheycharity.org

THE ALDER HEY HO-HO-HOE DOWN FRIDAY 17TH NOVEMBER • CAMP IN FURNACE, LIVERPOOL Grab your partner by the hand and join us for a fabulous night of fun, food and frolics at our amazing hoedown.

Bring your colleagues for an alternative Christmas works party, your friends for a great night out or your partner for a good old fashioned shin dig!

For further details and tickets contact Helen on 0151 252 5364 or email helen.hughes@alderheycharity.org

24 Remarkable Challenges

OUR AMAZING VOLUNTEERS

THE ALDER HEY LEAGUE OF FRIENDS The League of Friends has been operating for 50 years and many of its members have been involved from the very start. Although they are all a lot older than when they started, they haven’t lost any of their enthusiasm for supporting Alder Hey. The group have been involved in many fundraising initiatives and events over the past five decades including running events throughout Liverpool and have raised thousands of pounds to support our young patients and their families.

The group are looking for a new generation of young people to help them with their fundraising and to bring new ideas to their fundraising efforts.

If you would like to join the group, please contact Cindy Johnston on 0151 724 1435 or by email at cindyjohnston17@icloud.com

Thank you Barclays!

Barclays staff at Alternative Ascot Throughout 2016 staff from Barclays, Wavertree took time out of their busy schedules to volunteer for Alder Hey Children’s Charity.

The support of Barclays helped to make our Charity events a massive success. Not only did Barclays staff provide valuable assistance with events including Oli’s Safari Walk, Alternative Ascot and our clothes sales, but Barclays’ matched funding scheme also raised tens of thousands of pounds in additional funding to help patients and their families at Alder Hey. Nicola Matthews, Citizenship Manager for Barclays said, “We are delighted with the amount raised for Alder Hey Children’s Charity and would like to thank everyone who supported us to make this happen.

Barclays has a fantastic community investment programme that encourages employees to get involved in the causes we care about. It’s about giving back our skills, time and energy to support our local communities - so we’re thrilled to have raised this money.”

We look forward to continuing to work with Barclays throughout 2017.

T hank you!

Our Amazing Volunteers 25

A GRAND CHALLENGE When Derek Russell’s granddaughter Lillian Florence died at just six days old he made two promises; never to forget her and to do something to reduce the suffering of other children and their families. Having kept the first promise, Derek committed to keeping the second by signing up for the Alder Hey Grand Canyon Challenge 2016 on what would have been his granddaughter’s 11th birthday.

26 A Grand Challenge

“Unfortunately Lillian died just six days after being born. She had a heart condition and was just too weak and frail to survive,” Derek explains. “Whilst her life was very short and her loss the most heart rendering experience I have ever endured, I will be forever grateful to Alder Hey Children’s Hospital for having those six days with her, to have been able to hold her, unfortunately just once, to kiss her delicate brow and to keep my hopes alive.”

65 year old Grandel (as he is affectionately known to his grandchildren) from Clitheroe joined 16 other adventurers trekking the depths of the magnificent Grand Canyon, traversing rivers, climbing cliff faces and jumping from waterfalls. Despite being the ‘elder statesman’ taking part, Derek’s 15 months of training with a number of Clitheroe walking groups ensured that

the challenge was the ‘most rewarding thing’ he’s ever tackled.

“The trek itself was amazing,” Derek continues. “The scenery was stunning and the people who I trekked with were some of the most lovely, warm individuals I have ever met.”

Asked if he intends to relax and take what would be a well-earned rest Derek answered, “No way!

I have had so much fun, got to meet so many wonderful people along the way, developed new skills, been so active, lost weight and lived up to my promise to Lillian. Why would I want to stop?”

True to his word, Derek’s fundraising adventures are set to continue after he signed up to Alder Hey Children’s Charity Challenge for 2018, to trek the awesome heights of Kilimanjaro!

VIETNAM AND CAMBODIA CHALLENGE 12-22 OCTOBER 2017

Join us on a breath-taking 400km cycling challenge as we cycle from Vietnam’s Ho Chi Minh City (Saigon) to the ancient temples of Angkor Wat in Cambodia.

This is an opportunity of a lifetime and a fantastic chance to raise money for Alder Hey Children’s Charity.

The cycle is for people aged 18 and over and although it is challenging it is achievable for anyone with a good sense of fitness.

REGISTRATION FEE: £299 MINIMUM SPONSORSHIP: £3,000 MORE INFORMATION:

To read the Grand Canyon Challenge blog and to find out more about any of our overseas challenge events please visit alderheycharity.org/events, email community@alderheycharity.org or call 0151 252 5716.

KILIMANJARO TREK

4TH - 14TH OCTOBER 2018

CONQUER 5,896M OF THE HIGHEST FREESTANDING MOUNTAIN IN THE WORLD AND HIGHEST MOUNTAIN ON THE AFRICAN CONTINENT.

Following the beautiful Machame route that approaches Kilimanjaro from the south, this trek takes you through dense tropical rainforest and moorland until you reach the snow-capped summit where breath-taking views and beautiful ice formations are the reward for pushing your limits, both physically and mentally on this fabulous bucket list challenge.

REGISTRATION FEE: £399

MINIMUM SPONSORSHIP: £4,500 A Grand Challenge 27

SPOTLIGHT O ALDER HEY IS ONE OF THE BIGGEST AND BUSIEST CHILDREN’S HOSPITALS IN THE UK TREATING OVER 275,000 EVERY YEAR, INCLUDING PATIENTS FROM NURSERY, PRIMARY AND SECONDARY SCHOOLS.

Whether you’re a pupil, a parent, a teacher, or work at a school in a different capacity, fundraising at school for Alder Hey is a great way to make a difference to young lives and have fun along the way.

£49

Alt Bridge School in Liverpool had a splashing time at their car wash.

Aughton Christ Church School in Ormskirk held a yummy cake sale.

£350

£804

Benchill Primary School in Wythenshawe donated in memory of one of their pupils.

Brookfields School in Widnes held a fundraising day and brilliant ‘bounceathon’.

£42 All Saints CE in Halifax sang their hearts out on a trip to London.

£1,365

Anchorsholme Academy in Thornton Cleveleys laughed their way through a comedy evening in support of one of their pupils.

£250

28 Spotlight on Schools

£200

£1,135

Ysgol Dyffryn in Conwy had a fabulous football sweepstake.

St Leonard’s Primary School in Blackburn dared to enter the £83 Dragon’s Den!

St Cuthbert’s Catholic Community College in St Helens had a brilliant basketball tournament and wore Christmas jumpers in support of a pupil.

N SCHOOLS £258

Lyme Primary School in Newton-le-Willows had a non-uniform day.

Year 7 level 3 Health and Social Care students from Coleg Llandrillo School in Rhyl held a raffle.

£641

£90

£13

£121

Christleton Primary School in Chester organised various fundraising events.

£455 Prenton Preparatory School on the Wirral smashed their annual sponsored swim.

Great Sankey High School in Warrington held a number of events including a fun run and cake sale.

£200

£132

Forden Primary School in Welshpool had a Bring and Buy sale.

Our Lady’s Bishop Eton Primary School in Liverpool made loom bands.

Newburgh CE Primary held non uniform and Christmas jumper days.

£243

Woolston Brook School in Warrington kept fit by holding a sponsored walk.

Kew Woods Primary School in Southport had a carol concert, an enterprise day and staff wore Christmas jumpers.

£1,044

T hank you!

If your school would like to get involved in fundraising for Alder Hey or if you are interested in holding a school ‘Oli-day’ with a visit from our very own mascot Oli the Elephant please call 0151 252 5716 or email community@alderheycharity.org Resources for Primary Schools are also available to download on our website www.alderheycharity.org/fundraise/schools-fundraising Spotlight on Schools 29

Dylan’s story Dylan is a remarkable young man who is helping Alder Hey doctors find better ways of treating diabetes.

Dylan is 17 years old and like most people his age he has a number of important decisions to make in his life.

One important decision he recently made is to help Alder Hey tackle diabetes.

Dylan’s older brother Jake has type 1 diabetes which developed when the

immune system destroyed the insulin producing cells in his pancreas. Insulin is a hormone which helps glucose to travel to the cells to be used as fuel. Without this hormone the glucose builds up in the blood. It’s a lifelong condition and if untreated, it can cause very serious health problems.

When Dylan was screened at Alder Hey he found out that he is also prone to develop diabetes in the future. The screening revealed he had four out of the five antibodies which are present in someone with the condition.

Four years ago, Dylan made the decision to be involved with a piece of vital research at Alder Hey in preventing or slowing down the onset of diabetes.

The research will help prove that oral insulin will be able to prevent or slow down the onset of diabetes, thereby preserving the pancreatic function for longer. Potentially this new research could help develop better treatments for hundreds of children with the condition.

30 Dylan’s story

“It’s important for people to know how vital research is. Learning about conditions and new medication could help many children with their diabetes and other conditions.”

Dylan’s mum Johanna is full of pride: “I am very proud of Dylan for taking part in this research as he will help other children in the future. It has always been his decision to take part and he would like to continue for as long as possible. As a family we can’t thank Alder Hey enough for all their help and support over the last ten years.”

Dylan says: “It’s important for people to know how vital research is. Learning about conditions and new medication could help many children with their diabetes and other conditions. I’m proud that by taking part in the study at Alder Hey, I’m playing a part in finding out more for a future generation.”

HAS DYLAN’S STORY INSPIRED YOU TO FUNDRAISE? Every year about 275,000 children from all around the UK are treated by the hospital and thanks to the research at Alder Hey, many of their lives are transformed. A donation of just £3 a month can help more remarkable young people like Dylan! Visit www.alderheycharity.org

Dylan’s story 31