Evie was born with Crouzon Syndrome, a rare genetic syndrome which affects approximately one in 65,000 children at birth. It means that the seams in the plates in Evie’s skull had already fused together before she was born which would prevent her skull from growing normally. We didn’t know Evie would have Crouzon Syndrome before she was born, it was a complete shock.
Since birth, Evie has required five major operations and in January 2010 when she was two years old, she underwent surgery at Great Ormond Street Hospital (GOSH) for a second skull expansion. The surgery went well and we were expected to stay in hospital for a week while Evie recovered.
The day after the surgery, Evie was laying on her Mum Emma’s lap when she suddenly went very grey in colour and stopped breathing. The medical team rushed around her and she was taken to intensive care where they told us that she’d suffered a respiratory arrest. It was truly terrifying – I didn’t know what to think. Evie’s surgery had been a success and we’d already started to think about going home, but now my little girl had stopped breathing and was in intensive care.
Evie remained on the intensive care ward for two days while the medical team worked to stabilise her. At this time, Emma and I slept at the hospital so we could be near to Evie. It was awful. The next day I realised that because Evie might be in hospital for a lot longer that I couldn’t afford to keep staying in a hotel but I wanted to be as near to her as possible. And further complications meant that Evie was diagnosed with sleep apnoea and would require a mask to sleep with at night. However, because she has Crouzon Syndrome, the mask didn’t fit correctly and we were told we would need to stay at the hospital for as long as it took Evie to tolerate the mask – which could take several weeks.
We also had our eldest daughter Lydia to think about who was three at the time. I had absolutely no idea how I was going to keep my family together, be there for Evie, support Emma, and afford to stay in a nearby hotel. As a dad, all I wanted to do was to make everything OK for my family. But I couldn’t. I felt completely and utterly helpless.
When Evie was transferred from the intensive care ward to the High Dependency Bay I met a dad who told me he was staying at a place called Rainbow House, run by a charity, The Sick Children’s Trust. I had no idea who or what that meant – I just knew he was staying in free accommodation which enabled him to be close to his sick child. I asked the hospital staff about it and they contacted a lady called Sandra, the House Manager at Rainbow House. Sandra arrived at the hospital to meet me, alongside a lady called Tina, the House Manager at nearby Guilford Street House, and we walked to Rainbow House where I was given a room.
“From the moment I met Sandra and Tina, I knew we were going to be safe and well cared for. And when I walked into Rainbow House I was absolutely astounded. We had somewhere clean, comfortable and safe where we could stay for free, just minutes from Evie’s bedside for as long as it took her to recover. I couldn’t believe it. It was too good to be true.”
As the days turned into weeks, Rainbow House provided us with a safe haven and somewhere to retire to at the end of all the inevitably stressful and tiring days on the ward. It was somewhere we felt reassured and well protected. It meant that we did not have to finance staying in expensive hotels in London and it gave us privacy and time for reflection; I’m not afraid to admit that I shed many a tear at Rainbow House. But above all, it meant we could stay close to Evie. The hospital treatment at GOSH was of course of paramount importance, but the love of a family was the best medicine by far. And it was so important for us to be able to remain together during such a traumatic time.
“We stayed at Rainbow House for 51 days and during this time it was the only thing that gave us any stability. It also allowed Lydia to stay with us for the majority of Evie’s hospitalisation and an opportunity to create some sort of normality for her in a family orientated and loving house. We were able to create a routine for Lydia and a sense of ordinariness, whilst keeping her close to her sister. Now aged 11, Lydia has such fond memories of staying at Rainbow House – which she affectionately named ‘The Blue House’ because of its blue front door.”
Being able to make a home-cooked meal was of extreme importance to us as it ensured we kept our strength up and could be strong for Evie. We were able to eat with other families which made us feel that we weren’t alone – that you could share your day with each other and give one another that much needed support and positivity to carry on during such difficult times.
Sandra also gave us an immeasurable amount of support. We often say that she is our Fairy Godmother! She has always, and continues to, go above and beyond for any family staying at Rainbow House. She spent time with us as a family, particularly with Lydia, and would enquire about Evie every day. She was a huge source of support to both Emma and myself during the most difficult period in our lives. Sandra could make us laugh when we felt the lowest we’ve ever felt – when nothing seemed funny or positive. Both Sandra and Tina, who was often at Rainbow House, have become our friends – and we’ve fondly nicknamed them Cagney and Lacey! They are incredibly special people who I’ll always keep in touch with and people I’ll never forget.
“Over the past seven years we’ve stayed at Rainbow House on several occasions, the most recent being, July 2017, and every time we stay we’re welcomed in with open arms.”
After 51 days, Evie was well enough to go home. It felt odd to be leaving Rainbow House which had truly become our ‘Home from Home,’ but I felt an overwhelming sense of relief that the time had come to take Evie home – a time at one point we never thought we’d see. Over the past seven years we’ve stayed at Rainbow House on several occasions, the most recent being, July 2017, and every time we stay we’re welcomed in with open arms.
Since Evie’s most recent surgery in July, she continues to thrive. She is in mainstream school and is looking forward to her youngest sister, Mae starting at the same school as her in September. She recently won a special award – The Perseverance Cup, which was a very proud moment for us and testimony to what a special and brave little girl that Evie is.
We became Family Ambassadors for The Sick Children’s Trust in 2010 and since this time we’ve have gone on to raise around £25,000 for the charity. I’ve run three London Marathons, two of which as Banana man and Peppa Pig! I’ve also organised many school events to raise further funds for The Sick Children’s Trust at the schools I have worked in as a Deputy Head Teacher and Head Teacher. The most memorable of these was when Countdown numbers wizard, Rachel Riley, agreed to host a special version of Countdown in two of my schools. On June 26 2011 we appeared on GMTV as part of an interview with Chris Tarrant. We spoke live from Guilford Street House and it was also Evie’s fourth birthday which made it extra special! In July 2011, my dad, Emma and I attended The Sick Children’s Trust’s 30th Birthday celebration event and it was such a special night to be part of – that night we were presented with a prestigious fundraising award which was a very special and proud moment.
Our relationship with The Sick Children’s Trust is life-long; the support we’ve received has been truly amazing and we will be eternally grateful. We know that when Evie has further surgery we’ll need to call on Sandra once again for her indescribable support. But we know that we’ll be able to stay together as a family because we’ll have Rainbow House and that we’ll be able to stay close to Evie to help her recover. Because the best medicine for any sick child is to have their family close-by and because of The Sick Children’s Trust, we can do just that.
Ian Bowyer, Evie’s Dad
