Spring 2018 Chestnuts The newsletter from Chestnut Tree House Rebecca’s story ebecca Torricelli is 18 years old and has spinal muscular atrophy (SMA), a condition of the muscles and nervous system that affects around one in 8,000 people. She has never walked or crawled and Rhas always been in a wheelchair. Her condition affects her mobility, swallowing and respiratory system. Rebecca’s lungs are so susceptible to infection that a simple cold can lead to pneumonia and hospitalisation and her ability to swallow has deteriorated so much that she can now only eat puréed food. But despite all this, Rebecca, who is an extraordinary young lady, considers herself lucky: children with the most severe form of her condition rarely survive past infancy. She has kindly shared her story with us. “I can’t put into words what an amazing place it is and can only imagine what a haven it must have been for my parents.” I have been going to Chestnut Tree House since I was five years old. I was one of the first children to ever attend the hospice just after it was set up. Beforehand there was nowhere for struggling families to turn, and I can’t put into words what an amazing place it is and can only imagine what a haven it must have been for my parents. I was diagnosed with SMA type 1 when I was 15 months old, and my parents were originally told that I would lose all movement and muscle strength, so that I couldn’t even move my arms or head; I would not live past two years old. Can you even begin to contemplate how heart-breaking that must have been for my parents? However, my type was misdiagnosed, But with my brother and I, and my Dad constantly away on and I was eventually re-diagnosed with SMA type 2, with the business, she hit breaking point. A severe bout of pneumonia prognosis that although there would be a tough road ahead, led to me being put on bipap (an overnight masked ventilator). I could live well into my adulthood with advanced medical This was the last straw that made the hospitals realise that assistance. intervention was needed. A care package was organised for Up to the age of five, I was in and out of hospital five me so that my mother would be able to simply be a mother to or more times a year with viruses that led to pneumonia. In our family, as opposed to my full-time caregiver. between all this I gained a little brother when I was three. My This was also when we were introduced to Chestnut Tree mum has always fought harder than anyone I have ever known House. I can’t remember going when I was younger, but I and she tried to make it work for us for as long as she could. know it so well now. Continues on p2 1 Rebecca was our guest speaker at Continued from p1 our 10th Snowman Spectacular Ball in December 2017. She received a standing ovation. And I see young children there all the time with their families. You can physically see the relief on the parents’ faces to know that, even just for a weekend, they can let go. And when the child comes in with their siblings, you see the eyes of the brothers and sisters light up, because they have mummy and daddy’s full attention. “… it is rare to find somewhere of sanctuary… and that is what Chestnut Tree House is like for me and my family.” As we grew up and my family evolved, we continued to look forward to our little breaks at Chestnut Tree House. When I was eight my little sister entered the world, and as she grew she would tell everyone that she was going on holiday, which is what she saw Chestnut as. I mean, what isn’t there for a four-year-old to love? The massive garden with swings and a roundabout, toys and trucks and bikes, where you can watch the horses galloping in their fields on the other side of the fence. The dressing-up stand where my sister would give fashion shows of Minnie Mouse and princess costumes. The sensory room with its tranquil lights and lava lamps. To this day my 14-year-old, testosterone-filled brother even still enjoys going, mainly because they have every electronic device and online gaming system you can imagine! In February 2011, at the age of 12, I had spinal surgery – a seven-hour procedure to fuse two metal rods onto my spine to make my back as straight as possible. The operation has dramatically improved everyday aspects of my life; I no longer have to wear a body brace, which I had to wear for at least 12 hours a day, my lung is no longer being crushed which has greatly improved my respiratory efforts, and I can now wear pretty tops without having to worry that they will expose my brace, Rebecca and family which is of course very important. This life-changing operation most likely couldn’t have gone ahead if we hadn’t been able to stay at Chestnut for the two weeks sanctuary. Where you can escape, or if not escape, forget, prior to my surgery to ensure I was well enough to have the most of your worries and breathe a sigh of relief that you operation. It provided me with a hygienic, calm, fun place to have somewhere to go in your hour of need. And that’s what rest, where I could prepare for surgery, but also be distracted Chestnut is like for me and my family. from the difficult times that I would soon encounter. The I will never be able to say my life is easy. There are so hospice also enhanced my recovery by offering monthly many things I wish I could change, as much for my family as hydrotherapy sessions in the pool and I still go every month to for me, but I am so lucky to have what I do; loving friends help maintain my muscle flexibility and strength. and family, amazing experiences and memories, and my mind, I am one of the most able of those that attend Chestnut which is more important to me than any physical strength I and when I’m there, I see so many children who have so many could possess. There is so much I want to achieve in my life, different complex needs. I’ll go along the corridors and see a go to university, become a journalist, travel, have my own star on one of the doors, knowing that they are living their last house, a family one day. And who knows how much of that few hours on this earth, and I’m not stupid, I know that the I will achieve? There are so many things that my condition tiny baby in her pushchair, with minute oxygen, feeding and has taken, and will take away from me – my mobility, my suction tubes, most likely won’t survive the week. innocence, and eventually my life. But I go through all of this, In a world that is full of obstacles and uncertainty, knowing I am loved, who I am, and what I am capable of. And it is rare but imperative to find somewhere of that is invaluable. 2 What’s been happening at Chestnut Tree House? e are very fortunate at Chestnut Tree House to have a large cinema-style screen. This year we decided to make use of this facility and introduce a Cinema Club for the families who Wuse the hospice. Many of our families find it difficult to go to the cinema because of the need for wheelchair spaces and their children’s medical needs. We offer a range of movies suitable Cinema for all ages with the option of an early and late performance, complete with popcorn and snacks, enabling our families to Club have a proper cinema experience and enjoy the simple pleasure of watching a movie together. Sussex Police’s year of support Sussex Police have raised over £33,000 throughout the year with many different events including cake sales, dress down days, 24-hour runs, five- a-side football tournaments, golf days, abseils and quiz nights to name just a e were delighted that few. They also organised activity days Sussex Police chose to for the children and siblings, including support Chestnut Tree a police and fire activity day at the House as their charity of hospice and a family day for under Wthe year in 2017. 12s held at the police headquarters Chief Constable Giles York says, “I’m in Lewes. Families were able to sit on chance to fly drones and race remote really pleased to be supporting such a police motorbikes and go for a ride in a controlled cars. Finally, there were worthy and deserving cause and was police Jeep! A fire engine was also there Christmas parties, where Giles York really moved by my visit to the hospice. for the children to sit in. even made a special appearance as Having seen first-hand the fantastic In October the team put on a drone Father Christmas! facilities provided by Chestnut Tree flying event where the children and We would like to say a massive thank House I was particularly keen to help young people saw a demonstration you to Sussex Police for all their hard raise awareness of this charity.” of the police drone and then had the work and support during the year.