My husband and I have stayed at The Sick Children’s Trust’s Acorn House three times in the last year ...

My husband and I have stayed at The Sick Children’s Trust’s Acorn House three times in the last year and it really has been invaluable to us on our visits to Addenbrooke’s Hospital in Cambridge with our daughter. Our first and longest stay at Acorn House was for 30 days in which the house really did become our home. Ivy was diagnosed with Cerebral Palsy at only one year old and some months later was also diagnosed with epilepsy. She had been on medication for this and had suffered mild seizures. However in January of last year, Ivy suffered a severe seizure and was rushed to hospital. Doctors now suspect that Ivy has a genetic condition in addition to Cerebral Palsy. Since the seizure Ivy, has had a reduced quality of life and limited abilities. It would be extremely rare for a child to have both conditions but it is not impossible. We were heartbroken about the prospects of this, our funny joyful little girl had vanished overnight and we had a different child now with even more care needs that we could not make comfortable. It was hard to get through each day and we were constantly distraught. The Sick Children’s Trust provides private accommodation for families with sick children who are in hospital undergoing treatment. The charity runs eight ‘Homes from Home’ around the UK close by to six major children’s hospitals in the country. Without Acorn House we would not have coped, we live 1 hour drive from Cambridge, and we never wanted to leave Ivy alone. As a parent when your child is unwell the thought of leaving them alone in their most vulnerable state is unimaginable. I am self-employed, which meant that I did not earn when Ivy was in hospital, this meant we needed to control our spending. If we didn’t have Acorn House we would have spent huge amounts on accommodation and living expenses. To have Acorn House to get some respite was like being in a wonderful hotel. One of us would always rest while the other could stay by Ivy’s bed side. Ivy does not sleep well, and during her hospitalization her sleep was limited to about six hours. It was always reassuring to know that the nurse could directly call our room if there was the slightest change in Ivy’s condition. This was especially important when Ivy was unconscious and on a ventilator, it took Ivy six days to open her eyes. I really believe that if we had not been able to rest during Ivy’s hospital stays, we would not have been able to promote a positive vibe to her which definitely helped and still helps her recovery. We also made some really good friends while staying at the house. Every family staying in the house was going through the same experience, and so it helped to talk and realise that you were not alone. Joy, the house manager and her team were amazing, she always had a smile and was always there to help with everything. Acorn House gave us the strength to cope with the intense stress and worry. Towards the end of Ivy’s hospitalization we were even able to bring her to the house. This was so helpful when we needed to pack and prepare to leave. After a month, just being able to cross the road and sit in an armchair with her made a huge difference. Ivy now three years old, is still very unwell, but she is recovering slowly. We spend every second of the day working to rehabilitate her and fight for the best medical treatment available. We pray that the future is brighter for her now. Before Ivy became ill I knew nothing about The Sick Children’s Trust, but now I cannot imagine what we would have done while Ivy was in hospital without them or what we would do in future if they were not there for us. We cannot thank them enough. Jenny Knight, Ivy’s Mum

The birth of our daughter and first child, Rachel in January 2013 was such a difficult time

The birth of our daughter and first child, Rachel in January 2013 was such a difficult time, and The Sick Children’s Trust helped by providing us with free accommodation in its Treetop House at Sheffield Children’s Hospital. Rachel was born at Kings Mill Hospital in Sutton in Ashfield Nottinghamshire on the 23rd January, and diagnosed some 12 hours later with both Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) which are rare congenital conditions that affect approximately 1 in 3,500 newborn babies. The pre-natal scans had shown no problems, so this was a complete shock to us both. These conditions require intensive neo-natal care and corrective surgery within days of birth, so Rachel was transferred from the Neonatal Intensive Care Unit at Kings Mill Hospital to the Neonatal Surgical Unit (NSU) at Sheffield Children’s Hospital, which specialises in this type of surgery. It was only then that we heard about The Sick Children's Trust, and my wife Lisa and I stayed in Treetop House from the 24th January to the 9th February 2013. With TOF, the food pipe (oesophagus) is connected to the windpipe. Without surgical intervention, this allows air to pass from the windpipe to the food pipe and stomach. It can also allow stomach acid to pass into the lungs. With OA, the food pipe (oesophagus) forms a closed off pouch that prevents food from reaching the stomach. Prior to surgery, this pouch can fill up with food and saliva, which can eventually overflow into the baby’s trachea (windpipe), entering the lungs and causing choking. With our home in Sutton in Ashfield, staying at Treetop House made family life (which, as for many people is important to us) so much easier, enabling us to be close to our daughter and to bond in the first few weeks of her life. My wife was able to express her milk and eventually start breastfeeding just before we left the hospital. It was an amazing achievement to go from saline drip, to tube, to bottle feeding and then eventually breast feeding all with her mother’s milk. This would have been a difficult process without the support of The Sick Children’s Trust. Treetop House is located just a lift ride away from the wards, so staying on site saved us a minimum of two hours travelling every day. It removed the stress of travelling in the bad weather (at this time it was snowing) and allowed us to be close to Rachel 24 hours a day. We could get up for her feeds and cares through the night and day, continuing the family bonding. Having somewhere to go and sleep throughout the night and day, to eat properly and relax made life so much easier and helped to keep our strength up and our emotions together. It also allowed us to mix with other families in a similar situation, which made us feel less alone. We are now at home and Rachel is recovering really well and showing no real signs of her ordeal apart from her need for various medicines. She will continue to have appointments with the consultants until she is sixteen, and further surgery may be necessary if feeding proves difficult later in life. We are so grateful for the support of The Sick Children’s Trust, since without them a difficult period in our life would have been even more stressful – for this we will never be able to thank them enough. Tim Ash, Rachel’s dad