All the way from Gibraltar.

Pic caption: (L-R) Liana, Dario, Gianara and Angelo Vassallo

When our son Dario was born in our local hospital in Gibraltar, the first few days of his life were like any newborns. However by day five, when the midwife came to check on him, she noticed that he was losing weight and was very lethargic.

I was breast-feeding him like I did for his sister but there was something wrong which no one could pin point. At the beginning, the medical staff said it was a feeding problem, so we tried everything to make him eat more but he still wasn’t gaining weight so he was admitted to hospital where we stayed for nine days.

During this time the doctors did lots of tests and Dario was being tube fed. On the outside everything seemed okay but it was obvious that Dario was not. Then they did a metabolic screening and saw that he had acid in his blood and we were told by the doctors that they did not know how things were going to turn out for us.

That afternoon Dario and I were rushed by an air ambulance to Great Ormond Street Hospital (GOSH) in London. As only one parent was allowed to fly in the air ambulance my husband had to join me on the second day.

It was such a long way from our home and I was so disorientated when we arrived that finding a place to stay was the last thing on my mind. All I could think about was our son, and him getting better. On the first night I was found a room on the women-only mezzanine at the hospital but by the time my husband arrived the next day I was told we couldn’t stay at the hospital indefinitely and we weren’t sure what to do. We didn’t have any family in London and we couldn’t afford to stay in a bed and breakfast long term, but then the Family Accommodation team at GOSH mentioned The Sick Children’s Trust’s Guilford Street House to us. We stayed with them for three weeks in August 2010.

From the moment we entered the doors at Guilford Street House we felt at home. It has such a welcoming and warm feel to the place, not at all clinical like the wards, and it also felt like a safe haven, where my husband and I could be together and face each day as a family with a clear head. We were just around the corner or a phone call away to our room, should an emergency occur. We had that constant reassurance that we were as close as we could be.

Being around other families in similar situations made us realise that we were not so alone. We met this Portuguese couple and they shared their stories with us and us with them. We enriched each other’s lives and drew the positive out of our situations.

Also, for Dario I know being very near to us helped him cope better with the situation and had a positive effect on his recovery. He was so young and I wanted to do everything in my power to ensure that the bond between him and me had the opportunity to grow still, given the circumstances. By having a place to stay so close to the hospital, every precious moment could be spent by his side.
A few days before returning to Gibraltar, the doctors advised us that it would be good for us to try and deal with Dario’s condition outside of a hospital environment. I was very scared to do this, it was an out of your body sensation but we had to face our fears and do it to see how we were going to be in the outside world. We brought him over to the house and it wasn’t nearly as bad as we thought. Being in a familiar environment helped us all relax and take it one step at a time, giving us the confidence for the road that lay ahead.

Tina, the house manager, was an incredible support to us during our stay. She is a lovely lady and a very genuine person. She offered her heart to us and it helped us knowing that she was there with emotional and practical advice should we need her.
Our son is doing really well now and at our last check up the doctors said it was a pleasure to see him so well which was brilliant news. Although we still do not have his diagnosis we are hoping to get it soon, although the fact of the matter is that Dario is now a happy thriving little boy and this is all I can ask for.

We always make a point of trying to pop in and see Tina when we are over and although it is difficult, we did also have some good memories of our time spent at Guilford Street House. It was a privilege for us to be part of this charity which we are forever thankful to.

Liana, Dario’s mum

Our story by Katie Scott, Carmen’s mum

We stayed at The Sick Children’s Trust’s Rainbow House for five days in March 2010, when our daughter Carmen was being treated at Great Ormond Street Hospital (GOSH) after suffering from chronic kidney failure.

Carmen was just 17 months old when she became unexpectedly very ill one day at our home in Polegate, near Eastbourne. She was taken into our local hospital Eastbourne District General Hospitaland at first the doctors thought it was gastroenteritis but then she suffered a cardiac arrest due to severe dehydration and was rushed to Evelina Hospital before being transferred to GOSH with chronic kidney failure, two days later.

At the hospital she was immediately placed on a life support machine in intensive care and we feared for the worst. All we wanted to do was stay by Carmen’s bedside day and night but the nurses told us that the hospital accommodation was only temporary and that it may just be possible for only one parent to stay on the ward.

The notion that my partner, Ben, may have to go all the way home every day, leaving me on my own in such a scary situation, was a horrible thought. But then one of the nurses told me about The Sick Children’s Trust’s ‘Home from Home’.

They were there for us when we thought we had nowhere else to go.

Staying at Rainbow House helped us no end. The house manager, Sandra, was such a lovely person, very kind and welcoming and she made us feel at home as much as we could, straight away. It reassured our families that we were okay and had somewhere to stay so far away from home and it helped Carmen with her recovery as we were able to be with her all the time and we were only staying around the corner.

We had great peace of mind knowing that the ward could contact us day or night through the phone in our room at the house, and having a place to cook our dinners was a huge help to keeping our mind focused every day. It was also lovely to have somewhere to go, just to get away for an hour or so. To have a bath and a comfy bed to sleep in was amazing, even though we didn’t get much sleep!

It was also nice to meet other families staying at Rainbow House and talk to people in similar situations. Just knowing that we weren’t alone helped lift the burden of our situation.

Carmen is on the mend slowly, she will eventually need to have a kidney transplant at some stage in the near future, but for now she is doing so well with both her kidneys functioning at 21%. We want to thank The Sick Children’s Trust so much for being there when we needed them. It made such an awful time that little bit more bearable.