We had a massive response to this months Give Away, Getaway competition, most of the nominations were very deserving and a few not so much. After reviewing every nomination we decided that the winner of the holiday was Maureen Whitley, nominated by her daughter Denise Whitley from Cheshire.
“My mum put her life on hold to love and support my son aged 5 years, through out his short life & his terminal illness. Nothing was too much trouble and she loved and misses him so much. We couldn’t have coped without her. She deserves a holiday so much”
Harry, Denise & Maureen’s story
In 2003 Denise Whitley gave birth to a little boy named Harry (he later became known as Harry Bear because he cuddled like Kuala Bear). Harry began having seizures at a few days old and was admitted to Alder Hay hospital for about 8 months. Harry would suffer up to 200 seizures per day which Doctors couldn’t stop. He was put on a very potent medication and didn’t wake up for 12 weeks. Harry was eventually diagnosed with Malignant Migrating Partial Epilepsy of Infancy, only the 13th person in the world to be diagnosed with this condition.
Sadly the condition was resistant to anti seizure medication, this meant Harry was blind, unable to eat and drink, quadriplegic and had up to 200 seizures per day. He also had other complaints as a direct result of the condition. For example his bowels never worked as he had no internal muscles to help them, his lungs were badly damaged from pneumonia as he couldn’t move to clear them. He got pressure sores so easily and had to be turned frequently. Harry was also unlikely to live past age 5 years old. Naturally Denise, Maureen and their family were devastated. Harry needed lots of equipment including feeding machines, oxygen saturation monitors, suction machines, adapted chairs, adapted pushchairs, hospital bed, bath lift and oxygen pumps.
Maureen gave up her job to care for him so that Denise could continue to work as a Social Worker. Maureen also took turns with Denise and her husband staying in the hospital with him and she loved him so much. Maureen never left him alone and took everything in her stride. She had so much patience with him and took him everywhere. As part of Harry’s care Maureen learnt resuscitation, took him to appointments, swimming, walked for miles with him and did daily physio and exercises.
Harry had fits all through the night and regularly needed rescue medication, or resuscitation or even just comforting. Maureen had Harry two nights per week, to give Denise and her husband a break. Maureen’s husband even slept in bunk beds in the next room and Harry had his place in the bed, so that Maureen was as close as possible to him. Harry’s mouth was always open so his lips and tongue were unbelievably dry and uncomfortable. Maureen would sit for hours, tenderly bathing his mouth with warm water and moisturizing his lips.
As Harry’s condition deteriorated his care needs increased significantly. He was on fentynal patches (8 times more potent than morphine), liquid morphine and eight more medicines, 3 times per day. He was on oxygen 24 hours a day, 7 days a week and he needed canisters carrying where ever he went. Maureen had oxygen fitted at her home for him and even moved to a bungalow to accommodate his needs when he stayed.
Over the last year they knew we were going to lose Harry so Denise gave up her job to spend as much time as possible with him. However, Maureen never stopped her caring role. Some days Denise would drop him off with Maureen so she could have a break and would leave them sat on the settee together. When Denise would come back five hours later Maureen was still sat cuddling Harry and singing to him.
Harry took them all by surprise the day they lost him. Denise was taking a motorbike test and dropped him off with Maureen. When Denise returned to pick him up Maureen was singing to him and nursing him but his breathing was very labored and his eyes fixed and staring. Denise took him home and sadly Harry passed away three hours later.
Maureen was with Denise and her husband when Harry passed away, peacefully at home in his daddy’s arms 10 days after his fifth birthday (29th April 2008). They all cuddled him for a few hours after he had gone. Maureen came with Denise and her husband to Claire House Children’s Hospice were Harry was bathed, put in his Man Utd pjs, and laid in a lovely bed in the butterfly suite (cold room) for two weeks until his funeral. Maureen often stayed at Claire House and sat with Harry for up to 12 hours per day, holding his hand and crying. She misses him so very much and at times doesn’t know what to do with herself, for so long he was her life.
Denise told us that she and her husband couldn’t have coped as well with out her Mum and Dad. They could call her in the middle of the night and she didn’t mind. Harry loved her so much and even recognized her perfume. Harry taught them all something and changed anyone he spent time with. He was an angel on earth, with a beautiful, peaceful nature. The funeral on the 9th May 2008 was a wonderful tribute to such a young child. Over 250 people attended.
“Losing Harry has broken mums heart as much as it has ours. She is a fantastic mum and a wonderful grandmother and gives so much to everyone, without asking for anything in return. She managed to support us and Harry whilst still seeing her six other grandchildren every day (Laura 21, Josh 19, Emily and Jess 14, Alex 11, Tom 6). I would love her to win this holiday to let her know how much she meant to Harry and us.”
Firstly we are so proud to be sending somebody as deserving as Maureen and her husband on a 5 star All Inclusive holiday to the Savoy Hotel in Sharm El Sheikh but secondly and most importantly having learned about this terrible condition we are committed to raising awareness about it. To find out more about Harry’s story please visit www.harrysjourney.co.uk.
Support Claire House Children’s Hospice www.claire-house.org.uk
About Freedom Direct Holidays
Freedom Direct Holidays Ltd, from our offices in Newcastle upon Tyne help over 200,000 people a year across the UK, with their travel arrangements to the world’s top tourist destinations. Specialising in Cheap late availability holidays, flights and accommodation from a wide range of travel industry partners including, TUI Travel, Thomas Cook and Monarch Holidays. We are one of the Uk’s leading online independent travel agents.
The most popular destinations for our customers are Turkey, Spain and its Islands, Greece, Sharm El Sheikh and Portugal. We arrange flights from all UK airports including London Gatwick, Manchester and Glasgow. We have acted as a travel agent since 1997 and are both ABTA and ATOL bonded to ensure that all our customers have the best financial protection available.
John Cave, Natasha Bozym, Sean Gerrie
Tel: 0191 216 5511