(Please note that at the time of posting – March 2018 – this is the only item on this site not by me. It is by my son Mike and was delivered at a large fundraising dinner in Birmingham on October 28th 2017. The total amount raised was in excess of £140,000, the previous best being around £88,000.)
Hi. My name is Mike and this is my wife Sandeep. We’ve been invited here to share our story about what a huge difference Ronald McDonald House Charities made to us during our daughter’s illness last year.
Can you remember what you were doing during the Spring of 2016? We’d just been to the wedding of a close family friend. The cricket season was starting up again, and alongside work, my biggest worry was whether I’d be able to score any runs this season now that we’d be in a higher division. Life was pretty much normal. In fact things were looking good as Sandeep’s father was recovering well from a heart attack in February. We’d even been to our first barbecue of the summer and the sun had shone.
We have two daughters, Ava and Sylvie. Ava had just turned six and Sylvie was still three. A couple of days after the barbecue Ava told us that Sylvie looked yellow. We’d always joked slightly about what colour their skin should be, and having spent the afternoon in the sun it didn’t seem to be too unusual. However, with the whites of her eyes having changed as well, it was obvious this was something more serious. Sandeep rang the GP that evening, catching them just before they closed, and ended a day that started like any other bedding down at Warwick hospital on a strange, elaborately folding chair, with Sylvie being prodded, poked and tested, and a cannula in one hand. Alarming of course, but if you know Sylvie, far more an adventure than anything else.
The next day meant work for me, school for Ava and no idea of what was to come over the next three months. A week at Warwick Hospital seemed dramatic enough, but we could take turns in the hospital, stay at home in the meantime and life was almost normal. We were sure that things would be fine, after all, Sylvie didn’t seem to be getting any worse. The doctors at Warwick had been taking direction from Birmingham Children’s hospital during this week, but with no change in Sylvie’s condition, and the cause of it still being something of mystery, the Birmingham doctors decided they needed to see and treat Sylvie in person.
The move to Birmingham was a huge step and meant an end to my cosy little belief that there was nothing to really worry about. Not quite able to deal with the big problem yet, suddenly all the little pragmatic things became serious. On top of our daughter’s mystery illness and the doctors not knowing what to do about it, we didn’t know where to park, what to eat or where we could put our stuff. Do we have to pay £7 an hour to park? How long will we have to do that for? What is already a stressful situation on a huge scale becomes stressful in dozens of different ways on a tiny scale as well.
When we first found out about Ronald McDonald House, we didn’t accept the room. I think we still believed we’d be out of there in a couple of days. Whatever had happened to Sylvie’s liver seemed to have died down. She wasn’t getting any worse, so the doctors believed she was most likely to get better. We were even allowed home for the day on the Sunday, although we had to come back. We believed our little ordeal might just be coming to an end. However, the nurses had told us to accept the room anyway, and that it would be easier to give it up than to wait for another one to be available. Unfortunately, it wasn’t long before the news on Sylvie changed, she was going to need a liver transplant, and we were grateful for their advice.
Walking into Ronald McDonald House, I remember being amazed that a place like that even existed. It was something I simply hadn’t ever had to think about. When you think about it, it’s obvious that Children’s hospitals need good quality accommodation for families, but our lives had never required us to think about it before. It meant a lot that, in this frightening situation, someone was providing us with things that could ease our burden and make us feel at home – a kitchen with a cupboard where we could keep food, a TV, a place to play with Ava when she visited. It was a way of being together and taking a break from the ward. It felt like we were in a serious situation, but we weren’t in it alone.
I have a few different memories of time we spent in the House. One moment I’ll never forget was whilst we were waiting for a liver to become available. We’d been told on Tuesday that Sylvie would need a transplant, and urgently. Toxins that her liver should have been filtering out were in her bloodstream. They were collecting in her brain and her behaviour had changed. She was angry and upset all the time and there was nothing we could do about it. Then she was simply asleep, for days. The doctors and the transplant team assured us that livers became available regularly and there wouldn’t be a problem getting one, but by Thursday I was seriously worried. I sat in our room on the first floor of Ronald McDonald house wondering what I’d be able to say at the funeral of our three year old daughter. It was later that night that we were told a suitable liver was available and that the transplant would take place the next day.
I also have much happier memories; it was a place where we could spend time relaxing away from the ward. Friends and family visited us there; one day, once Sylvie had recovered enough, we had a picnic in the first floor living room. I also remember one afternoon spent with Ava exploring the ‘fun’ rooms on each of the different floors.
I also need to mention the coffee machine. I could start the day with a really nice cup of coffee. Something that shouldn’t seem important suddenly becomes a really big moment in your day. When so much else is either going wrong, or is completely uncertain, there’s one little thing that goes right. It’s hard to explain just how meaningful that can be until you’ve been in the situation, but it really did make a difference. It also mattered that I didn’t have to pay for it. I was at home, making a coffee, not buying it from a hotel I was staying in. It was often these little moments that made the difference.
Having the house as a base made a huge difference to us. It solved a thousand and one tiny little problems that would have mounted up. It was both an extension of the hospital, because the people who worked there clearly understood the importance of what they were doing, and it also felt a million miles away, because the atmosphere was so friendly and relaxed. It really enabled you to reset your mind and be refreshed by the time you went back to the ward.
We feel like this had a huge impact on Sylvie’s recovery. Staying on the ward can be really difficult. It can mean very little sleep, it can mean being awake watching your own child suffer, or it can mean hearing another child suffering next to you or just round the corner. Having the house nearby meant simple things like being well rested, well fed and feeling healthy ourselves. We were able to cook something we wanted or made us feel good. We didn’t have to live on junk food. We could come back to the ward and treat Sylvie with renewed strength, patience and determination. It meant being able to take everything on the chin and still be positive for this little girl who needed to see you smiling and strong.
Without the house our journeys would have been 45 minutes to an hour, either on three motorways or through busy towns. It’s a journey we did make on many occasions, but the ability to walk five minutes to somewhere that was ours, where we could simply cook some food, watch TV or read a book away from the ward changed everything. It really did change everything.
We ended up staying around ten weeks. It was an absolute Godsend for us. It enabled us to stay calm, patient and strong by Sylvie’s side when she needed it most. Our friends and family regularly commented that we were coping with the situation well. We were only able to do this because of the stability and support provided by the Ronald McDonald House Charity.
Leaving the house was obviously an important day. We’d been through a lot, but we’d also realised how much more other people were going through. We couldn’t wait to get Sylvie home to her own bed, but we were full of trepidation, wondering how we’d cope away from the huge professional network of support both at the hospital and in the House. We were worried that perhaps things wouldn’t work out and we were giving up our room when we might need it again soon.
We were certainly different people after the experience we’d had. The difficulty we’d been through watching our daughter suffer and struggle obviously had a huge impact, but so too did the realisation that there were so many people, especially at the House, who were not just willing to help, but enthusiastically committed to doing so. We really felt like we saw the best side of human nature that summer, through the love and support of our own family and friends, the professional dedication of the hospital staff and the caring, considerate and ever thoughtful help of the staff at Ronald McDonald house. They give nothing but care, sympathy and courtesy, and they’re understanding when you are unable to do so in return.
To watch Sylvie now can make you feel like none of this ever happened. She’s not just a typical five year old, bouncing, climbing, running, jumping, swimming and, just this last week, cycling without stabilisers. She can make other five year olds seem calm and sedate by comparison. It was an incredible feeling to take her back to Ronald McDonald to open the room we sponsored. We had gathered donations in various ways, but also held an event Ava and Sylvie’s school – a quiz. Knowing that we were helping the next people who might find themselves in our situation, a situation they might be completely bewildered by and completely unprepared for, gave us a sense of closure. It felt like things had come full circle. We’re planning to hold our quiz again, and we’re proud to continue to be involved in fundraising for Ronald McDonald House.
Fundraising and donations to Ronald McDonald House make such a big difference to families like us. The very existence of the House at all is an absolute game changer for families and therefore for the children relying on their strength and support. Our daughter had a life threatening illness, and it was a traumatic time for us, but in the grand scheme of things we were lucky compared to what other people are going through there. Being able to have your friends and family come to visit you, or somewhere just to relax and spend time with your other children, even just having a good cup of coffee when you first wake up, these are no small things. When your child is ill, these are your world. They can be the difference between strength or weakness, courage or failure, hope and despair.
Thank you for listening to our story, and thank you all so much for being here tonight to raise funds for Ronald McDonald House Charities. Thank you.