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Sean’s garden

In our July newsletter we told you about an appeal we had launched through the local papers to help makeover the garden of young cancer patient, Sean Gold.

Despite having his left leg amputated in a bid to stop the spread of Osteosarcoma (bone cancer), Sean wanted to be able to get outside and play football in his garden. The garden of his family home was, at that time, rough uneven ground on different levels.    

But, thanks to the generosity and support of individuals and a huge number of local businesses, Sean’s garden was transformed. The ground was cleared, a new lawn, decking and path were laid, a summer house was put up where he could play pool and garden furniture was purchased. We also installed a giant trampoline for him to play on.

In August, Sean officially opened his new garden and many of those who had contributed towards it came to see the end result.

Sadly,  Sean died in October. While he was not able to enjoy his garden for long, we hope he was excited about being involved in the project and spent many hours outside watching the progress and chatting with the team of gardeners.

Sean’s bravery and strength of character will always be remembered by those involved in the project and all who knew him.

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Many of the young people we support battle with severe or rare conditions. 16 year old Ansh Bhatnagar, gives an insight into how his condition has impacted on him and his family.

Ansh was diagnosed in the first year of his life with Beta Thalassemia Major, a severe blood condition that requires him to have blood transfusions for the rest of his life. His treatment is continuous and he takes medication daily.

Ansh, tell us about your earliest recollection of your condition.

“Having being diagnosed from a very young age, I have not known life without it. The condition means that the red blood cells in my body are unable to function normally, leading to excess levels of iron and haemoglobin present. I didn’t realise that it wasn’t the ‘norm’ to go into hospitals and have blood transfusions monthly and regularly take medication, but it’s not going to stop me from achieving my dreams”.

Ansh, how does your condition impact on your everyday routines?

“Not a lot of people know about my condition, it’s not really something I tend to shout about. Of course my family and close friends know, but I have never seen it as something that would hold me back. When I do go into hospital each month to have a transfusion, I use the 9 hours to catch up on homework or creating computer games, which has given me a taste for becoming a games developer in the future. At the weekends I regularly volunteer at the charity shop before tutoring kids who are preparing to take their exams, as I know that people benefit from this support”.

Ansh, how has the Trust helped you?

“Having received so much support from SAT at a young age, I know from personal experience that the work they do truly makes a difference. My family and I have stayed at The Bluebells and attended lots of events including sleepovers, parties and activity days. The first event I ever went to was a Christmas outing in 2009 to see Peter Pan at the 02 Arena. For me this was a real treat and to spend time with so many people that had similar lives to me made me feel even more at home. Although I am older now, I still regularly assist the Trust’s Youth Support Worker, Katie with events at The Hub and we have recently started organising art and drama workshops. For me, it would be great to see lots of children attending these so that they could share some of the experiences I have found beneficial over the years.

From initially spending time helping out at The Hub, I have since become involved with the Trust’s Youth Council and am now the Chair member. This is something that I am particularly passionate about as all the members are either suffering from a condition themselves, or their brother or sister is battling an illness, or they may be bereaved. We have either stayed at The Bluebells or attended adolescent activity days, so we use our personal experiences to influence decisions and make recommendations on how SAT can give young people a service that meets their needs. Some of the things we are implementing from our suggestions are as wide ranging as out of term events, career support sessions and healthy eating workshops. For me it was essential to suggest more practical support for those that miss significant periods of school life, as I have had a number of operations whilst being at school and feel that it would be really beneficial to provide purposeful assistance for children needing help to catch up.

One of my favourite things we have introduced is a newsletter for all teens that are supported by SAT. It took a while to think of an appropriate name, but after much deliberation ‘Azure’ was chosen. I think this name really stood out as it has connotations of the sky on a sunny day and that is the feeling we want to convey to the reader when reading the magazine.

Another way in which I have tried to continue my association with the Trust has been through encouraging others to learn about the Trust. Last year my college took part in the National Citizen Service scheme, which gives 15-17 year olds the opportunity to get together and try new things by delivering a project that makes a real difference. I successfully nominated SAT, which resulted in a team of 9 from NCS coming to The Hub before it opened to help build furniture and get the place up and running. My team were really happy about working with a charity that contributes directly to our local community. I was so grateful that I could give something back after receiving so much support over the years.

A personal highlight for my mum Rekha and I was when SAT invited us to attend Number 10 Downing St at their reception last year. I was pleased to be with other members of the Youth Council as we all got to enjoy and share the same experience. I felt honoured to meet Samantha Cameron and tell her more about the great work SAT does”.

Ansh, what does the future hold for you?

“Keeping my condition at bay through regular treatment will be part of my life forever, but I am intent on going to university. Nothing will get in the way of my dreams!

Amy Michael and Evan

A number of the young people we currently support battle with kidney disease. Here three families give an insight into how renal failure has impacted on their lives.

Claire Hills tells us about her son Michael:

Michael is 12 and was diagnosed in October 2008. Although treated initially with medication, he slipped back into renal failure in February 2013.

Michael has a Haemocatheter inserted into his chest for dialysis and a gastrostomy (feeding tube) as he needs to get his nutrition through a milk feed. To get him ready for a transplant he has had both kidneys removed and is now on the transplant waiting list.

Michael travels to hospital three times a week for Haemodiaylsis, which lasts four hours each time. Michael is also fluid restricted so he has his overnight feed and is left with just 100ml left to drink each day. He loves sport but cannot play any contact sports. At night he has his feed so sleepovers with friends are rare as people don't understand the feed equipment and fluid restrictions. Hopefully surgery will give Michael a working kidney. We are on standby in case a deceased donor is found for transplant. 

Day visits to The Bluebells have enabled us to swim together for the first time as Michael doesn't like to use a public pool. It gives us time together away from home.

Both Michael and Charlotte loved the sibling sleepovers; Michael didn't have to worry about people wondering why he was in a drysuit in the pool or watching a DVD whist attached to his feed pump!

Angela Kinrade tells us about her daughter Amy:

Amy was diagnosed in 2008; she spent four-and-a-half years on dialysis before having a transplant 16 months ago. Her treatment is continuous, and she will always have to take immune suppressive drugs.

The immune suppressive drugs make her vulnerable to getting sick and the steroids make her moody at times. Having been on dialysis for so long she missed a lot of vital schooling and is now far behind her peers, but she's working hard to catch up. Amy doesn't get invited around to friends’ houses because people are just too afraid to deal with a different child. Despite all this, Amy is a very strong, confident and loving child. She doesn't let her illness get in the way of life; she just gets on with whatever comes her way.

We decided to leave our home in South Africa for the UK to give Amy a better chance of survival. This meant leaving all our family members behind so there is no family support here in the UK. The stresses of everything also caused my marriage to break down. Amy's older sister, Jessica, has suffered a lot. She has had to fend for herself from an early age when I've been in hospital with Amy. As a mother, you can never get rid of the guilt even though you know you had no choice. The relationship between Amy and Jessica has been strained with Jessica resenting Amy for all the changes that have occurred in our lives.

Amy's kidney will eventually fail, we just don't know how much time we have. When this happens she'll be back on dialysis waiting for another kidney.

The charity has been a breath of fresh air in our lives. The support is amazing and spending time at Bluebells is a home away from home. It's a place where we can spend quality time together without the stresses of life constantly knocking at your door. It's a time to just forget for a while.

Mary Bartlett tells us about her son Evan:

Seven-year-old Evan was diagnosed in March 2012 with end stage renal failure from an unknown cause. He had a transplant eight months later with a kidney donated by his father, Paul. Life now involves hospital visits associated with the problems that come from being immune-suppressed. Hopefully Paul’s kidney will last for 10-15 years so dialysis and further transplants will no doubt be part of the future.

The Trust has given us a stress free week together and so many things to look forward to throughout the year.

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Hollie- Forever five

Being at close hand with families throughout the journey of their child’s illness is always a privilege; here we look at our relationship with the family of Hollie Oxenham.

When in February 2013 Hollie, a previously healthy, active four year old, began to complain of headaches and appeared unsteady on her feet she was initially treated for a virus. Six subsequent hospital visits took place before Hollie was eventually diagnosed on the 1st May with an inoperable brain tumour, known as a Bilateral Thalamic Glioma. Although indications from the outset were extremely poor Hollie’s parents, John and Louise, never asked for a time prognosis as they always wanted to live with the hope of a cure. The following weeks, then months resulted in a “new normal” revolving around hospital life in London, miles away from the family home in the Berkshire town of Bracknell, initially for a biopsy, then for attempts to drain fluid from the brain before a shunt was fitted. Infection of the wound site and CS fluid complicated matters further, which meant a further delay to the planned months of radiotherapy and chemotherapy.

“At this point our world had been turned upside down, but we had to cope for Hollie’s sake" explains Louise. Trying to retain a sense of normality was important for Hollie but also for her baby sister Emily and big brother Lewis. "We tried to do as much as we could whenever Hollie was well" continued Louise "we crammed in as much as possible to create precious memories".

In spite of the devastating diagnosis and rapid deterioration Hollie continued to bring sunshine, smiles and much merriment until she drew her very last breath. Time spent with Hollie always involved laughter, giggling and lots of affection- she was an articulate, confident little girl who enjoyed ballet lessons, trips to Legoland, having her nails painted, lunch at McDonalds and storytelling at the library with her grandparents.

Helping families to build memories is something the Trust sees as a priority. Hollie and her family became known to Sebastian’s Action Trust early on in her treatment; they first enjoyed time at The Bluebells in August 2013 as an extended family with Nanny Carol and Grandad John, as well as attending events like our Christmas party and Easter Egg Hunt. Wellbeing therapy came to Louise as well as Hollie and sister Emily, allowing a relationship to develop that made us privy to the Oxenham family during their most difficult days. When it became apparent that Hollie really wanted to be a bridesmaid for her mummy and daddy the Trust was able to help with the hastily organised Oxenham family wedding-such a happy occasion in spite of the worries of Hollie’s rapidly deteriorating condition. No-one present on that glorious March day will ever forget the beautiful sight of Louise, Emily and Hollie arriving to meet John- the beaming smile on Hollie’s face as she scattered petals as she entered the ceremony, or the poignant picture of her cuddled up with her daddy throughout much of the wedding breakfast.

A week before her death the Trust's nomination saw Hollie crowned Bracknell’s Child of Courage-a small way in which recognition could be paid to her incredible bravery, resilience and grace in fighting an impossible battle.

Tragically, Hollie died on the 29th April 2014- at home, peacefully, in the arms of her parents. Just one year separated a life full of promise, hopes and dreams and the worst fear of every parent.

Being asked to write and deliver the eulogy at Hollie’s funeral was both an honour and a responsibility that was not undertaken lightly.

Support for the Oxenham family continues for immediate and even extended family members. We recognise that learning to live with loss and a lifetime of missing is highly individual, so our efforts are never prescriptive but tailored to the needs and wishes of each particular family.

“The Trust has been, and continues to be, incredibly supportive. They have helped us create memories that we never would have imagined. Always with a smile and shoulder to cry on, they have gone above and beyond anything we thought possible” -Louise.

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Isaac’s mum Claire tells the family’s story:

Tell us about Isaac:

Isaac is four-and-a-half. He has unexplained Significant Global Developmental Delay, meaning he has severe mental impairment and limited mobility. No one really knows why. He has very little understanding of the world around him, is not expected to learn to speak and understands nothing we say. He’s been hospitalised many times with respiratory distress.

How did you discover Isaac’s condition?

Three years ago I walked out of a paediatrician’s office, feeling like I’d been hit by a bus. I’d been right; Isaac wasn’t just slower than his older siblings. Something was very wrong and it was never going to go away. We felt loss, inexplicable guilt and overwhelmed by the impact this would have on our lives. We felt alone and just not up to the task.

How do you feel about the support available to you?

There are charities to help many specific disabilities, but when no one knows quite what is wrong with your child and why, you are left feeling you fit nowhere.

How has the Trust helped?

Nearly a year into our journey we found the Trust. I was searching for sensory resources to stimulate Isaac. They had a sensory room, hydrotherapy pool and sensory garden. I expected occasional use of their facilities, I wasn't expecting them to take our family as a whole and hold our hands along our journey. They bowled us over offering us a free short break at The Bluebells - time out together when life felt hard, in an accessible building, with ideal facilities for Isaac that his siblings could share.

What has been the biggest help?

What means the most is the care and attention the Trust has lavished on Isaac’s big brother Josh and sister Miriam who deal with a lot. They need a turn to be the special ones. I cancelled their birthday parties last year because Isaac was the sickest he’s been, one step away from induced coma.

Miriam had a Girls’ Sleepover at The Bluebells, an outing, her nails done and took part in a girly talent show. They also provided a course of music therapy that helped Miriam explore feelings about how family life had changed and did wonders for her confidence. Josh attended a Boys’ Sleepover and hung out with other kids with disabled or seriously-ill siblings.

What is different about the Trust?

They take a family as a whole unit and see the far reaching affects of illness and disability. My children are celebrated and supported in their own right.

At The Bluebells, I don't have to apologise and make excuses if my non-verbal child screams out, throws paint at the art therapist or soils the sheets. We can be us, within a supportive community that cares about us as a whole.

  

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