Spring 2016
Update
www.martinhouse.org.uk
Perfect 10 for Strictly Fundraising Stars Since the inaugural dance-off in 2014, Strictly Get Dancing has become a highlight of the Martin House calendar and currently boasts its status as one of our most glamorous events. Over three years the competition has raised in excess of £100,000, with dancers of all abilities taking part to support the hospice’s vital work.
and Liam’s son Niall died at Martin House in 2006 at only seven weeks old and since then the family have supported the hospice in a variety of ways, including heading up the Otley Friends Group. The couple fought a tough competition to be crowned overall champions but impressed the judges with their stunningly elegant waltz to Moon River. Two of Anna and Liam’s boys, Finn and Zack, attended the final and were ecstatic with their parents’ win. A sincere thank you goes out to all those who contributed to the success of this year’s event.
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sponsorship, raise the funds needed to provide our services for an entire day - £15,000.
Taking place on Sunday 17th July, and sponsored once again by confectionery firm HARIBO, the event offers all the excitement of the big colour events, without the big price tag. For only £20 for adults, £10 for 5-15s and £50 for a family ticket (under 5s go free), you get a day out that the whole family can enjoy and remember for years to come.
So how can you help? It’s simple 1. Grab your family and friends and book online today at www.martinhouse.org.uk or contact the events team on events@martinhouse.org.uk or 01937 844569 2. Start raising your sponsorship at home, work or school 3. Find your whitest t-shirt and prepare to get messy!
Take Care of What Really Matters Did you know that over half of UK adults have made no provision for loved ones in the event of their death?* Whether you thought you had nothing to leave or simply haven’t got round to it, this May you can take the time to safeguard the things that matter to you by making or changing your will as part of Make a Will Month.
“We were delighted to support Strictly Get Dancing once again. My family has personal experience of the wonderful work done at the hospice and I understand how vital it is that the amazing support families receive there continues. I can’t think of a better way to do this than by getting people dancing and raising lots of money!”
This year’s coveted glitter ball trophy was snapped up by Otley couple Anna and Liam McQuaid. Anna
This summer the Colour Run returns to Stockeld Park for its second year, giving you the chance to get tickled pink, yellow, green and blue, and raise vital funds for our work across the region.
Last year’s event saw over 400 runners take part, raising over £24,000 for life-limited children and young people, and their families. This year, we are looking to smash this amount and, through your
This year, 16 couples signed up, including five Martin House families, and undertook six sessions of intensive training with professional dance teacher Darren Hodgson prior to the grand finale on Saturday 27th February at The Engine Shed, Wetherby. Darren and partner Jane have supported the event for the past three years:
The evening was once again hosted by ITV Yorkshire’s Duncan Wood and judges included President of the Dance Teachers Association 2014/15, Jane Tumelty, Emmerdale’s Jeff Hordley, The Grumbleweeds’ Robin Colvill and ITV Yorkshire’s Christine Talbot. Dancers were treated to a full makeover by local beauticians and stylists before dazzling the crowds with an enchanting display of sequins, spray-tans, and cha-cha-chas.
Bring On The Colour!
Winners of the John Nelson trophy for most improved couple, Julie Golding and Tim Chadwick
Throughout May, you can make or change your will at a discounted rate with one of our participating solicitors across North, East and West Yorkshire.
At only £60 for a basic will or £110 for a pair of basic matching (mirror) wills, now could be the perfect time to make your wishes clear.
Having provided for family and friends, you may also like to consider leaving a gift in your will to Martin House. You are under no obligation to do so but any gift you make could help us to provide for future families who need us, helping them to make the most of their time together, however short that may be. Moreover, the gift would be completely tax free, ensuring that all of your contribution goes towards supporting our services. You can find out more about Make a Will Month, including a full list of our participating solicitors, on our website at www.martinhouse.org.uk. If you would like a confidential chat about how leaving a gift could benefit Martin House, please email appeal@martinhouse.org.uk or speak to Jodie Shepherd on 01937 844569. *According to research by Will Aid (2015) www.willaid.org.uk Martin House Spring 2016 3
It’s All Swings and Roundabouts
Supporting Asian Mums
The initial phase of this redevelopment was completed in November. In addition to replacing the existing swings, we have created a new seating area and a roundabout suitable for electric wheelchairs. Despite the inclement weather over Christmas and New Year, the development has already proved a hit with families and will no doubt grow in popularity over the warmer months.
Taking place each year at the Carlisle Centre in Bradford, our Asian Mums’ Day is open to all mums and female family members caring for lifelimited children. Director of Care Sheila O’Leary explains why the initiative is so important:
Play is every child’s right, whatever challenges life may throw at them, and it forms a huge part of the experience for the families who choose to stay at Martin House. Over the past few months we have been busy redeveloping our outdoor play areas, creating more accessible and inclusive spaces that can be enjoyed by all of our families whatever the weather.
explains what the redevelopment will mean for families: “When a child has a life-limiting condition a lot of focus can be placed on the illness and their immediate medical needs. But providing time and space to play not only improves their emotional and psychological wellbeing, it allows them to enjoy doing the kinds of activities that all children enjoy.
“Families from minority ethnic groups can face significant barriers in accessing hospice care. Some families can find differences in language problematic. There can also be differences in cultural values that mean parents can be influenced by other family members when considering enabling their child to receive hospice care.”
Earlier this year, our contractors started work on Phase 2 of the project, which involves redeveloping the area outside the bedrooms and conservatory. “This area includes a water play station, covered seating, an activity centre, sand pit and slide, all of which are fully accessible and suitable for all wheelchairs.”
Community Bereavement Service Update Care Team Leader, Caroline Brennan,
In our Spring 2015 Update, we told you about our plans to extend our bereavement service to reach out to families who had not previously accessed support from Martin House. Our Community Bereavement Service is now accepting referrals from across North, East and West Yorkshire. Bereavement Support Worker, Diane Whitehead, explains how the service can help: “The service supports families following the death of a child or young person from a life-limiting illness. We offer families the opportunity to talk through difficult feelings following their child’s death and help them to live with and manage their 4 Martin House Spring 2016
Covering over 5,000 square miles of Yorkshire means that our services must be tailored to a wide range of communities and families from diverse cultural and ethnic backgrounds. One of our key support groups is our Asian Mums’ Day, which offers carers in this group the chance to relax and share experiences with those facing similar challenges.
grief in a positive way. We can tailor support to individual needs and arrangements can be made to support families wherever in the region they live.”
Individuals can refer themselves to the service up to two years after the death of a child. The service can accept referrals that relate to the death of life-limited children ranging from babies diagnosed antenatally to young adults up to the age of 25. Professionals are also welcome to refer, provided they have the full consent of the family. To discuss a referral, contact 01937 845045 or email communitybereavement@martinhouse.org.uk.
“Our Asian Mums’ Day is a vital resource in supporting this group. It not only allows our team to relieve some of the anxieties associated in accessing care, it enables families to confront their challenges together, with like minded individuals, in a safe, supported, and confidential space.” The day follows a fluid structure, led largely by the needs of the attending families. Beginning with an update on Martin House and any changes to services that might affect families, the mums are then invited to discuss any issues or concerns they have about their child’s condition and their caring responsibilities. It both encourages the women to share their personal experiences and provides an avenue for our Care Team to gain deeper insight into the needs of this particular group. Following a delicious curry lunch prepared by the team at the Centre, the group spend the afternoon taking part in craft activities and socialising with fellow mums. Over the past eight years, activities have included felting, batique, weaving,
Decopatch, massage, cookery and even belly dancing. Martin House art therapist, Sarah Aspinall, has been supporting the Asian Mums’ Day for over five years. She explains the benefit the group has for the women taking part: “Some of the mums we invite may have never stayed at the hospice and have been reluctant to do so. It gives them the chance to speak to other mums in a similar situation who have been to Martin House, and helps dispel some of the worries they might have about coming here themselves. “It’s wonderful to see the bonds that form as the day goes on, and mums who are quiet and tentative at the beginning of the day really open up and enjoy sharing experiences with the other women.” Our next Asian Mums’ Day takes place in June this year. If you think that you or someone you know could benefit from support, feel free to have a confidential chat with our Care Team on 01937 845045 or email
care@martinhouse.org.uk.
Martin House Spring 2016 5
Fond Farewell to Director of Fundraising Following the unexpected decision to remain at Martin House until her replacement could start, our Director of Fundraising, Alyson Wort, this February celebrated her retirement from the hospice. Alyson has led the fundraising team for six years and has been involved with major campaigns including the 2014 Good Night’s Sleep Appeal with BBC Radio York. Alyson looks back on her time at Martin House:
“What a privilege it has been to spend the last six years of my working life at the wonderful place that is Martin House and to have met, spoken with or read letters from so many of our amazing supporters. Your generosity has been, and no doubt will continue to be, both inspirational and humbling. It would have been impossible to move to another job after this, so retirement really was the only way I could ever take my leave.
“I often think that my role has been like the conductor of an orchestra in that everyone else is working so hard to raise the money needed to run Martin House, and I merely brought it all together and tried to make sure we all stayed in tune!” A warm welcome goes to Alyson’s successor, Jodie Shepherd, who joined the team at the end of February following a move from Sue Ryder Manorlands Hospice in Keighley. Jodie is already looking forward to meeting some of our wonderful families and supporters and we are sure she will have some exciting plans in store. We wish both Jodie and Alyson all the best in their future endeavours.
Grand Car Rafflfle Hits the Road
WIN
Thanks to the generous support of our longstanding sponsors, HARIBO and Evans Halshaw Leeds, our Grand Car Raffle returns this summer for its sixth year, having clocked over £180,000 for children’s hospice care in our region.
For only £1 per ticket, you could be in with the chance of owning a brand new Citroen C1 with a 3-year warranty, servicing and - best of all zero-rated road tax. This compact and stylish little motor could be the perfect run-around or a great
6 Martin House Spring 2016
first-time car for heading off to Uni, so there really is no reason not to have a go. Every ticket you buy or sell could make a difference to a family in your area, ensuring they receive the very best care and support wherever and whenever they need it. This year, we expect the fundraising odometer to exceed £200,000 and the support of confectionery firm HARIBO and car dealership Evans Halshaw Citroen of Whitehall Road, Leeds, ensures that all proceeds go towards supporting Martin House families. You can buy tickets online at www.martinhouse.org.uk
Colin Reaches Peak Fitness for Music Project In March last year, Leeds Cockpit founder Colin Oliver decided to take on a big challenge to raise funds for music therapy at Martin House, tackling 20 Scottish Munros, including Ben Nevis, in just five days: “As a father of three I wanted to support something relating to children, and my business had raised money for Martin House before. I contacted the fundraising team and we discussed music therapy.
The cause was very close to my heart and so I asked that any money raised should go towards the development of music therapy at the hospice.” “The sense of relief at completing the challenge was immense - relief, exhilaration and exhaustion were the main emotions I felt at the top of Ben Nevis. I felt gratitude for all the support of everyone who had sponsored me, happy that I could help Martin House with their amazing work, and blessed that we have such inspiring wildernesses still to explore right here on our doorstep in the UK.” Colin has so far raised almost £8,000 and the total continues to rise. When asked what challenge he might take on next, Colin’s response was unequivocal: “People have been asking me if I ever want to climb another mountain - well there are 282 Munros, and I’ve only done 20, so I can’t possibly stop now!”
How We Use Your Information We store your details so that we can keep you up to date with upcoming events and plans for future care. We always do our best to respect your mailing preferences and would never bombard you with information.
Your address details are used to make sure your orders of merchandise and, if you’ve signed up to an event, your fundraising pack make their way safely to your door.
To claim your Gift Aid and make your money go further, we need to keep a record of your full name and home address.
Your personal information is stored digitally in a secure database. Only relevant people have access to it and we don’t keep any information we don’t need.
We never share your information with any other charities or organisations. The only exception to this would be when we have to pass details to event organisers such as Jane Tomlinson’s Run For All.
Most importantly, we keep a record of your support including all your fundraising activities so that we can thank you for the difference you’ve made to our families! Martin House Spring 2016 7
All the Little Things To all appearances, six-year-old Malaika is a normal, healthy little girl. But having been diagnosed with a life-limiting condition at an early age, Malaika is in need of round-theclock care that often leaves mum Sanam struggling to cope. After their first stay at Martin House in November last year, the Bradford family are hopeful that, with the right support, life can become a little more manageable. At only a few weeks old, Malaika was diagnosed with Congenital Heart Disease, a condition that causes increased heart rate, shortness of breath, chest pain and mobility problems. She also suffers from frequent cyanosis (poor oxygenation of the blood), otherwise known as ‘blue episodes’, for which she requires immediate hospitalisation. For Sanam, the past six years have been a constant battle to find support for the family: “The last 12 months have been really stressful for us all. In January last year, Malaika underwent open-heart surgery and doctors were unsure as to whether she’d pull through. After the operation, I cared for Malaika myself, changing her tracheostomy at home, as well as managing her physiotherapy. Since then she has had several severe blue episodes and endured repeated hospital stays:
and Saira (3), family life revolves around Malaika’s medical care, meaning that weekend activities and time out together are almost impossible:
Before our first proper stay in November, Malaika had been very ill and I was barely sleeping. The stay came at just the right time for both of us.
“Planning outings is a huge struggle. In the past, when we’ve been out and about, Malaika has fallen or become ill, so when I’m looking at places to go I have to consider where is suitable for her, and what might happen if she is ill away from home.
“The time we spent at Martin House was an extraordinary experience. It was so good to get away from everything. Going to the hospice gives me the chance to talk to other parents and realise I’m not alone their
“I often feel guilty not being able to spend time with the other children. They sometimes get upset at the amount of attention I give Malaika, but when she falls ill, they understand why she needs me so much. My eldest, Nimrah, acts as a mother, sister and friend. She will help to wash and change Malaika and is a huge support to me. I’ve always tried to be honest with them all about the reality of Malaika’s condition and we take each day as it comes.”
children might have different needs but we are all in the same boat. I don’t need sympathy; it’s so wonderful to be able to speak to people who understand. “When I talk to people about the hospice, they assume it’s all about end of life care. But Martin House do everything. Malaika loves to sing, and when she last stayed she made a CD of her singing nursery rhymes and other songs. When I listened to it, I was in tears! It’s building up these memories that’s so special; all the little things that we do together that mean so much.” Sanam and the girls are now looking forward to their next stay at Martin House in just a few weeks’ time, where they will be able to relax, play and make more of the memories that will keep this very special family bond going strong.
Sanam self-referred Malaika to Martin House in the summer of 2015, and was overjoyed when the family were invited to a special tour prior to their first stay: “Malaika loved her first visit to the hospice. When we got there she didn’t know where to look first, and was so excited saying, “look at this, look at that”. She didn’t want to come home at all!
“I’m lucky to have the support of my parents and sister, who live close by, but there are very few people I would trust with Malaika’s care. Although I’ve previously tried to access different services in Bradford, there are few who really understand Malaika’s condition. Because she looks normal, people don’t understand.” The challenge of caring for Malaika 24 hours a day, seven days a week is made more difficult as Sanam must juggle Malaika’s needs with those of her three sisters. For Nimrah (13), Romesa (10) 8 Martin House Spring 2016
Martin House Spring 2016 9
Ten Years of the Leeds 10k The Leeds 10k turns ten this July and dedicated fundraiser and shop volunteer Diana Jenkins will be getting her Martin House running vest on once again, having taken part every year since the inaugural event in 2007. Diana tells us what first inspired her to tackle the Leeds 10k and what makes her continue supporting Martin House a decade on: “I read Jane Tomlinson’s book whilst on a camping trip and I was so inspired I thought to myself, ‘you can do something too’. My husband and I had always done a lot of walking but it was the first time I’d done any sort of serious running. For the first race, we supported Jane Tomlinson’s foundation, but in our second year, having done fundraising for Martin House in the past, we chose to support the hospice and we haven’t looked back.” The Leeds 10k was the first of Jane Tomlinson’s Run For All events, an initiative that has inspired thousands across the country to get running and raise money for their chosen charity. Since its launch in 2007, the event has raised over £2.5 million for good causes and sees around 10,000 entrants taking part each year. Diana, who also volunteers at our shop in Yeadon, is aiming to finish well under the two-hour mark having completed previous runs in around 1 hour and 40 minutes. “Peter was so impressed with my efforts the first year, he joined me next time round and has taken part ever since. It was his idea last year to carry the Yorkshire flag all the way around. Not only were my legs aching at the finish line, my arms were aching too! But lots of people told us that the flag had helped inspire them to keep going, so we’ll probably be doing it again this year!” “One of the things I love about fundraising for Martin House is the response when we send any money in. After a family birthday recently, we raised £30 through a mini-auction and almost immediately received a thank you letter from the hospice for our efforts. Whenever we do any fundraising activities, the team are brilliant and we get a lot of support from local people 10 Martin House Spring 2016
who can relate to the Yorkshire link and are glad to sponsor us for a charity that helps families on their doorstep.” Having been accompanied by daughters Natalie and Jackie, and granddaughters Becky and Naomi in 2015, Diana and Peter hope that they will be joined by even more family members for this year’s special anniversary run.
Upcoming challenge events If you feel like taking on a challenge and joining Team Martin House this year, we have a range of challenge events for individuals and teams alike. • Sunday 15th May Dragon Boat Race - Roundhay Park, Leeds • Sat-Sun 11th-12th June ITU World Triathlon Series Leeds • Fri-Sat 17th-18th June / Fri-Sat 12th-13th August Skydive - Hibaldstow, Lincolnshire • Sunday 10th July 10th Anniversary Leeds 10k • Sunday 7th August - York 10k • Sunday 11th September Great North Run - Newcastle-upon-Tyne Sign up online at www.martinhouse.org.uk or contact the events team on 01937 844569 or events@martinhouse.org.uk
Going the Distance for Local Families Last year, fyooz boss and Business Club regular, David Clark, tackled the Edinburgh Marathon and raised over £1,400 for our families. This year will see him putting his running shoes on for children’s hospice care once again as he attempts to smash his fundraising personal best in the London Marathon. David’s company, fyooz, specialises in a range of IT and marketing services. With his work a world away from the hospice sector, David was introduced to Martin House through longstanding friends and colleagues Chris Farrington and Roger Fielding. He has been a member of the Business Club since April 2015 and is a regular attendee at the club’s networking events. David tells us: “fyooz take its corporate responsibility very seriously and we love doing our bit for the community. Our friend and colleague Roger has personal experience of Martin House, and after a guest invite to the Business Club we decided to continue supporting the hospice.” David’s first challenge for Martin House also saw him run his first marathon and he completed the course in 3 hours, 37 minutes, well under his 4-hour target: “The sense of achievement was immense. The last 4 miles were the hardest, but my thoughts about the children and young people at Martin House pushed me through the tough periods. Crossing the finish line was very emotional for me, both as a personal achievement and because of the difference it would make to the charity.”
preparing for his second as he looks forward to the London Marathon. But with a new fundraising target of £1,500, the feat is no less challenging second time around: “Getting out of the door to train is one of my toughest challenges. Cold, dark nights are not exactly appealing but once I am out there, I do enjoy the running whatever the weather.” “The fundraising team at Martin House are a very helpful and friendly bunch of people, from assisting with fundraising ideas, to providing marketing materials for our corporate responsibility page on our website. “I would recommend joining the Business Club as this is the easiest way to keep up to date with activities in and around Martin House. The team are always excellent hosts and it’s a great way to network and achieve a good level of corporate and social responsibility with relative ease. Getting involved in fundraising activities is always fun, well supported and you start to feel like one of the Martin House family.”
Business Club Benefits
Having completed one long-distance run, David is now
• Invitations to attend and host monthly business •
networking events
BUSINESS CLUB
Your company logo on the Business Club webpage with a link to your website. You can also link back to us and help us to promote our work
• The opportunity to engage with and feature on Martin House’s social networks • Regular updates on opportunities for additional fundraising, volunteering and sponsorship of Martin House events
• Full use of the Business Club logo for your marketing and communications materials • •
Business Club member plaque and window stickers to display
Support from our experienced team to help you meet your fundraising objectives
Our next Business Club networking event takes place on Thursday 19th May, 12pm - 2.15pm at Oasis School of Human Relations, Boston Spa. If you’re interested in attending or would like more information about the Martin House Business Club, speak to a member of our corporate team on 01937 844569 or email amacleod@martinhouse.org.uk.
Martin House Spring 2016 11
On Shift with the Shop Volunteers Over 150 of our volunteers have roles in our shops across the region. They give up their time and energy each week to sort through hundreds of bags of donations, preparing items for sale and providing excellent customer service on the shop floor. Earlier this year, our Harrogate shop was damaged during a flood caused by a faulty boiler. Over the past weeks, the volunteers have worked tirelessly alongside our retail team to bring the shop back into action and ensure we can continue to serve the Harrogate community. We joined them for a morning shift to find out what they get up to and what makes them keep coming back week after week. Stocking Up When donations come into the shop, the retail volunteers are responsible for sorting through the bags and boxes and selecting which items are suitable for sale. Some specialist items may be sent to the hospice for sale online on our eBay store, whilst others may sell better in a different shop.
Room to Grow: at Thorp Arch
all shop displays contain current information and are stocked up with the latest flyers and posters for events and information about the hospice. Service with a Sparkle Making the customer experience as positive as possible is a key role for our retail volunteers. Whether it’s keeping the shop clean and tidy, ensuring items are easy to find, or helping to organise our fabulous window displays, the warm and welcoming environment they create ensures customers return time and time again. If you are interested in volunteering for your local shop, contact our team on 01937 845045 or volunteering@martinhouse.org.uk. You can also drop by and speak to any of our shop managers.
Find a Martin House shop near you –
Any items that are damaged or not otherwise suitable for sale are sold on to a recycling company so that nothing is wasted. Volunteers steam and press all the clothing so that the items are clean and fresh for sale. They also label each item with its size and price before placing them for sale on the shop floor. Creating a Community Hub Our volunteers are often the first point of contact for members of the community looking to support Martin House. They are kept up to date with hospice updates through regular training sessions and internal newsletters so that they always have access to up to date information to pass to supporters. The volunteers are also responsible for making sure 12 Martin House Spring 2016
Skipton
Harrogate Ilkley
Wetherby
Shipley Yeadon
Acomb York Thorp Arch
Boston Spa Garforth
Coming Soon
Headingley
Selby
Our retail operations are a vital part of our fundraising activities, bringing in a regular source of income and placing us firmly at the heart of the communities we serve. In the autumn, we opened our warehouse and showroom at Thorp Arch Estate, Wetherby and over the past months, the facility has gone from strength to strength thanks to the support of local people and businesses.
items. This means we can accept more donations, distribute them to shops more easily, and ultimately raise more funds for the hospice.”
The opening of our warehouse facility forms part of our strategic plan to expand our retail operations, helping to fund the resources needed to care for life-limited children and young people across the region. Retail Manager Stephanie Rimmington explains:
to various areas to collect donated items
“Thorp Arch was an obvious choice for the location of the warehouse and we jumped at the opportunity when a unit became available. It is close to many major routes and is only a short drive from Leeds, Harrogate, and York. It also has the added bonus of a showroom area, where the public can browse stock with ease. “Since opening, not only have we been able to improve the organisation of our donated stock, the facility has given us muchneeded extra space for clothes, books, homewares and, of course, furniture and other large
Donations are welcome at the warehouse itself Monday - Saturday 10am - 4pm and we can arrange collection and delivery of large items. Our bright and airy showroom is open to visitors to browse stock during these hours. If you are interested in volunteering at Thorp Arch, you can contact us on 01937 845045 or volunteering@martinhouse.org.uk.
Calling All Van Drivers! We have a team of volunteers who go out or to take goods to our shops. We are currently looking for drivers who would be confident using vehicles from our fleet of vans and would enjoy spending a few hours each week assisting our retail operations across North and West Yorkshire.
Unit 657a, Thorp Arch Estate, Wetherby, LS23 7JF
01937 849039
Martin House Spring 2016 13
A Goodbye “For All the Right Reasons” For most of her life, four-year-old Jenna Wilkinson suffered multiple seizures on a daily basis and doctors did not expect her to live beyond childhood. But miracle surgery in June last year left Jenna a very different little girl, and ten months on she is busy living life to the full. At only 7 weeks old, Jenna suffered a seizure that lasted for the next three days. She was admitted to the Intensive Care Unit at Leeds General Infirmary, where specialists diagnosed her with a form of non-genetic polymicrogyria. From her first hospital admission, Jenna was continuously unwell, sometimes fitting for up to ten minutes at a time, several times a day, and often spending several weeks in hospital. In addition to her daily seizures, Jenna struggled with low muscle tone, cortical visual impairment and severe learning disabilities. Paediatricians had no long-term hopes for Jenna’s condition, and recommended that Mum Katy seek support from Martin House: “It was difficult at first: you can’t just leave a child who is ill and it’s hard to trust others. But the staff at Martin House had so much experience, they could relate to things straightaway. Never once did I have to explain anything in minute detail, and they took the time to really understand Jenna’s conditions.” For Jenna and Katy, the hospice also meant some radical changes, as then consultant, Dr Mike, made the decision to alter Jenna’s medication: “We had a few emergency stays after Jenna’s first operation in 2011, sometimes arriving in the middle of the night. Dr Mike made some big changes, even stopping drugs he felt weren’t helping Jenna. It took someone with experience to make that decision, and it changed Jenna for the good. “We had some fantastic experiences during our time at Martin House. The atmosphere around the dinner table was wonderful - everyone is on a level playing field, and Jenna could sit and join in. 14 Martin House Spring 2016
“Whilst you’re at the hospice, the care team concentrate on the child, so that you can get some rest, and enjoy just being. Having that distance from the caring allows you to really notice and appreciate the smallest things – like Jenna’s reaction to touching a guitar for the first time, or sitting on the vibration box and feeling the Lion King being played.” Following a second operation in June last year at Great Ormond Street, Jenna has had no further seizures and after a long deliberation, Katy felt that the family no longer needed input from the hospice. In September, Katy and Jenna bid a bittersweet farewell to the Martin House team, as they left the hospice for the last time: “Martin House has been a massive part of our lives. For Jenna, it was a crucial part of her life: more caring than a hospital, but more stimulating than a school. I want the world to know about this place. “Since leaving Jenna has started to develop at a steady rate given her struggles with seizures, the impact on her health and the regression caused to her learning. It was strange at first and almost quite daunting, but gradually we have found our feet and started a few chapter. “Jenna will always have additional needs and be fully dependent, but she is healthier, she’s happier, and her quality of life is unbelievable compared to the baby I first took to Martin House. Most importantly for me I know we have a safety net, where if we ever needed that level of care again all I need to do is ask.”
An Inspiring Place to Be It is always special for us when our children and young people choose to share their stories about Martin House. So when we heard nine-year-old Isabella had chosen the hospice as the subject of her school project, we couldn’t wait to read it. Isabella’s younger sister, Livia, died at Martin House last year at just six weeks old. Though Isabella spent only a brief time at the hospice herself, she has fond memories of both her time there and time spent with her sister: “We stayed for a day and overnight and I got to watch Mamma Mia and make things in the art room. After the funeral, I was allowed to take my two best friends back to the hospice so that we could spend some time together. It was really nice of them to let me do that. “We have lots of things from Martin House to help us remember Livia, like a little magnet with her fingerprints on, and I keep some of them in my memory box along with things I collected when we went to different places with her.” As well as being a keen footballer, Isabella is a big fan of Enid Blyton’ s Famous Five series and loves writing her own stories. When Thorner Primary School offered her the chance to take part in a writing competition about an inspirational person or place, she relished the opportunity and was awarded a medal for her efforts.
ed nspir has i e s u o y. tin H harit e “Mar for c k ld lik r o w I wou , r r e me to d ol ser o I am d rai n u f When ra artin eithe and M to be r do e k me to e wor pired a car e s n i I hav e has what f Hous o e s becau this ere.” h ed t learn
Over the past months, Isabella and younger brother, Tom, have attended our Time4Us2 siblings group. The group offers bereaved siblings time to reflect on their feelings following the death of their brother or sister, and to make friends with other children in a similar situation: “It’s not always easy to talk to my friends at school but I’ve made some good friends at the group and it’s easy to talk to them because they understand better. We designed our own t-shirts last time and I’m looking forward to wearing them when we go to camp.”
Isabella and her friends in this year’s group will soon be spending a weekend together at Lineham Farm. As well as enjoying fun activities and learning to care for the animals, “The pe the group will take ople who work th their specially made truly ins ere are piration a l memory lanterns b e c a u make a d se they ifferenc on a ‘midnight walk’ e t o people’s lives in a good way through the woods. . Most p you mee eople We hope that all the t who ha ve been Martin to children have a fabulous House w il l say that time and that Isabella are sad t h ey about w hat hap has lots to write about but hap pened py about when she gets home. wha
t came from it. Martin H o u s e always makes p eople ha ppier.”
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Martin House Children’s Hospice, Grove Road, Boston Spa, Wetherby West Yorkshire, LS23 6TX Tel: 01937 845045 appeal@martinhouse.org.uk www.martinhouse.org.uk Follow us on
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