Sunday, 28 August 2011

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

Friday, 12 August 2011

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.

Thursday, 28 July 2011

Cumbria RU Charity Bike Ride 2011




The weekend of the 8th-10th July 2011 saw a very different task ahead of the Cumbria RU Development Team, as they swapped their Development Plans for Bicycles!

Earlier in the year RDO Liam Nicholls had the birth of his second child Harry who unfortunately at one week old was taken very ill and rushed to the RVI at Newcastle. During the extensive testing by specialists within the Special Care Baby Unit the worry of where to stay was taken away by Crawford House, this purpose built accommodation ran by The Sick Children’s Trust meant a huge burden had been removed from the shoulders of Liam and partner Sarah so that they could focus on caring for Harry during this tough time. Almost 6 months on and Harry is coping with his Galactosemia through a controlled diet but many other babies who were in hospital at the same time will still be there due to premature births and specialist attention being required. This means that Crawford House will be providing a constant oasis for the parents at this difficult time.

This is what sparked Liam and team into a fund raising effort to support The Sick Children’s Trust rather than giving a smaller one off donation. To raise the target of £1500 it was felt that a unique challenge had to be presented and so the 265 mile cycle around all the Rugby Clubs in Cumbria was decided to be the best option.
The core team consisted of; Liam Nicholls (RDO), Martin Grealish (CRC Copeland), Graham Kidd (CRC Carlisle), Garry Holmes (CRC South Lakes), Kieran Marshall (CRC Barrow) and Ryan Young (Brother in Law of Liam). Support was provided by Trevor Richardson (CRC Allerdale), Russell Gainford (CRC Copeland) and Shelley Atkinson (CRC Eden) with guest riders joining in at various sections of the route.

DAY 1 After a crisp & early morning bus trip to the Furness peninsula courtesy of S H Brownrigg Coaches Egremont, the team got their final preparations in prior to setting off back up the coast on a journey taking in Hawcoat Park, Furness, Millom, Gosforth, Egremont, Moresby, St Benedict’s, Whitehaven, Workington and eventually Cockermouth where they would be camping for the evening. En route the cyclists were met my members of Millom RUFC and lunch was provided by Egremont RUFC giving a much needed boost to the team after a tough mornings work. The next main refreshment stop was at Workington RFC where some ice cold juice and mars bars were provided for all the team, these were key to getting through the final leg into Cockermouth riding into a headwind all the way. In the evening the team received an excellent meal provided by Cockermouth RUFC on completion of a very hilly and challenging first day. Seizing the opportunity to capitalise on some tired legs Cockermouth then challenged the team to a game of ‘Touch Rugby’ which was a competitive event despite the aching limbs!

Trevor ‘Monty’ Richardson who was in charge of logistics also managed to talk Sandra and Steve Stainton into cooking breakfast for the team as well, so a huge thanks to the Cockermouth Club for everything they did to support the fund raising effort. Due to his youthful exuberance Trevor also manage to damage his ribs during a game of touch which prompted a consequent doctors visit and a lack of activity for 6 weeks to allow some healing to take place.


DAY 2
Day 2 produced some very stiff team members and packing up the bags and tents took substantially longer than usual, however the smell of breakfast cooking in the clubhouse was the carrot for all members to increase their pace. After a substantial refuelling the team set off to Netherhall the first call of the day, Netherhall provided more refuelling which was very handy as this proved to be the longest day of the trip, again the hospitality of the club was excellent despite dealing with another convention on the club site. Silloth was the next port of call and then the up and down road to Aspatria was calling all riders! A brief stop at Aspatria saw the riders then set off to Wigton where lunch was waiting in the form of Harrisons Cumberland Sausage Baps, this prospect excited everyone and was probably the fastest 8 miles of the trip, no one travelled the miles faster than Trevor Richardson in the red support vehicle, as anyone knows ‘Pies and Sausage are his forte’! After stocking up on sausage sandwiches the team then set off for Carlisle getting caught up in a horrendous downpour on the way with flash flooding, thunder and lightning all thrown into the equation. However everyone plodded on at their own pace knowing that it would not be too long until we could get dry and warm again. The usual hospitable welcome ensued at Carlisle with a large welcome party but again the stay was brief to ensure we remained on track to complete the ride in a decent time. However the team still managed to take on plenty of Calories thanks to the efforts of Graham Kidd’s wife Suzanne. A brief photo at Creighton was the next stop before the team picked up the pace to cross into the Eden Valley.
Penrith was the next destination where the weather was beautiful, sunny and very warm. Some ice cold Lucozade and King Size Mars Bars courtesy of Geoff Matthews were just the tonic to drive the riders through the final 22 miles of day 2 towards Upper Eden. This was a stunning part of the journey with a lot of up and down riding but the sun shone on the righteous and the arrival at Upper Eden at around 8:15pm was a very welcome one clocking up 104 miles for the day. The news that the tents were not required for the evening was also extremely welcome as the club invited us to sleep on the clubhouse floor coupled with a BBQ to take replenish some more energy.

DAY 3 On the third and final day the team awoke to a beautiful morning in Kirkby Stephen and used the Upper Eden Facilities to make some bacon sandwiches and refreshments to prepare for the day ahead. The morning involved a cycle downhill towards Sedbergh and then onward to Kirkby Lonsdale around 34 miles which unfortunately contained a slight headwind! The weather improved as the day progressed and arrival at Devils Bridge in Kirkby attracted many odd looks as we arrived on non engined bikes amongst the multitude of motorcycles at this famous landmark. After unsuccessfully trying to swap mountain bikes with a number of true bikers we carried on to the club where we were confronted with a Harley Davidson Convention and more bikers! The temptation was almost enough to break a few of the riders but we decided to carry on with leg power for a while longer. Kirkby provided some more sandwiches for the gang and also a crossbar challenge which was won nonchalantly by Graham Kidd who had clearly been saving his energy for this task!
There was unfortunately no avoiding the main A65 road towards the motorway from Kirkby so the riders had to be extra vigilant. We did manage to lose one rider at this point, Calumn Howse who could be seen entering Kendal later on via the main dual carriageway and not the suggested ‘back road’, he was however difficult to miss in his luminous orange top to match his hair!

Looming in the back of everyone’s mind was the upcoming trek up Dunmail Raise after we had left Ambleside, but the team enjoyed the quiet and scenic ride up to Windermere & Ambleside Rugby Clubs with the latter providing some well needed refreshments and snacks plus a blindfolded kicking challenge which Kieran Marshall looked like he had been doing for years! He converted his first effort easily suggesting he maybe needs to do a bit more work!!

The team chatted to members of Ambleside / Westmorland Barbarians happily delaying the departure and hence the climb up the formidable ‘Dunmail Raise’. The ‘calm before the storm’ was a beautiful winding ride bypassing Ambleside Centre followed by the extremely tough ascent of the aforementioned Dunmail. Some riders were beaten by the sheer size and length of the pass but other just ground out the yards and reached the top eventually after what seemed like hours of pedalling. The reality of the situation however was, that we were less than an hour of completing the whole journey with loved ones waiting in the Keswick sunshine for our arrival. An easy rise to the east of Thirlmere and a sharp rise to the Lonsties area of Keswick saw the group congregate ready for the ‘Freewheel’ down into Keswick. The town was doused in sunshine and the breeze blew as all the riders accelerated down the main road hardly touching the pedals for the first time in 3 days! The final turn into ‘Davidson Park’ was excellent as families and friends welcomed back the team after a fairly epic journey, it was extremely emotional moment with all riders embracing one another in recognition of the effort invested in the last 72 hours cycling. Also on hand was a very alert Harry Nicholls welcoming all the riders back from their trek.

Keswick RFC supplied meals of the riders choice which was the most ideal way for the riders to finish and was appreciated by every single individual.
The Cumbria Development Team would like to thank each and every club who came out to support, donate and offer motivation and challenges to the members. Thanks also to SH Brownrigg Coaches, West Cumbria Learning Centre for their support. Final thanks to Liam Magennis of UK Screening Solutions who provided; A Support Vehicle, Liquid Refreshments & Energy Bars, First Aid Provision, Tshirts & Cycling Jackets and a £500 donation towards The Sick Children’s Trust.

Day 1 Miles = 86
Day 2 Miles = 104
Day 3 Miles = 71
TOTAL MILES = 171

Tuesday, 26 July 2011

We were just minutes away from the ward.





Our daughter Honor was born in October 2010 and we were discharged from hospital and had a lovely few days at home.

However, on day five of life Honor suddenly became extremely unwell. We took her to our local Accident and Emergency in the early hours and after initial treatment in Addenbrookes Hospital, Cambridge, it became apparent that she had a heart problem and she was transferred by the CATS team to the cardiac intensive care unit at Great Ormond Street Hospital (GOSH) in London.

Once there she was diagnosed with an uncommon defect of the blood supply to her heart (ALCAPA) and since first showing signs of being unwell she had, to our horror, suffered a heart attack. Honor had her first operation at just six days old.

It soon became clear that things were not going to be straightforward and that we would have to be in London for several weeks. We have two other children, four year old Angus and two year old Lachlan, and at this stage we realised that we had to provide some
stability for the boys as well as being with Honor.

We were so grateful when a room became available at The Sick Children’s Trust’s Rainbow House, just around the corner from the hospital. The facilities here made it possible for us to maintain a degree of family life at a very stressful time, something that would otherwise have been impossible, or impossibly expensive. We heard of the charity initially from one of my work colleagues whose daughter had had cardiac surgery at GOSH, but the offer was made by the accommodation office in the hospital.

Our two boys were being looked after by my wife, Fiona’s, parents for the first two weeks of Honor’s time at GOSH but as soon as we moved into our ‘Home from Home’ we were able to have them in London for long weekends. Trips to see Honor on the Intensive Care Unit to read her stories were interspersed with visits to Coram’s Fields, Hamley’s and rides on London buses – something of a novelty for boys from rural Suffolk. Angus even started referring to Rainbow House as “our London home”.

Rainbow House gave us the chance to continue to act as a family, even at Honor’s most
difficult times. Our ability to take the boys to see Honor meant that they appreciated how
unwell she was and that we had to be in London because she needed us there. Their initial
fear of all the tubes very quickly changed to instructing their grandparents that they were
allowed to stroke Honor’s head but were not to touch any of the tubes as they were helping the doctors to make Honor better. We very much feel that being able to involve the boys to some extent meant that the transition to having Honor at home again was something they eagerly anticipated and when that time came, went smoothly.

It was good to meet other parents whose children were unwell in the house. Much
discussion ensued about our children’s respective problems and how we were all coping with the stresses of that time. In particular it helped us put Honor’s health in perspective
compared to some other children and families with major problems.

Knowing that Sandra, the house manager, was there on a very regular basis and that the ward knew where to call us at night was a huge relief to us too. We initially thought that we could stay with Honor 24 hours a day but it quickly became clear that we also needed our rest to deal with each day effectively. Sandra dealt quickly and efficiently with any questions we had about staying there and was a great source of support to us - sometimes a simple smile and “hello” can make the world of difference to a very bad day.

By mid-December, contrary to what we were initially told to expect, Honor had had enough of hospital life and decided she wanted to go home for her first Christmas. Our two boys were of course delighted to be back at home and welcomed Honor immediately as their new special sister. Without the ability to have them with us in London we feel this transition could not have been so easy.

Honor has made an impressive recovery with a significant improvement in her heart and mitral valve function. She may or may not need more cardiac surgery in the future; if that is required we are committed to going back to London and GOSH and are reassured by the knowledge that The Sick Children’s Trust will be there for us once again. We are hugely indebted to them for the care and support our family was given during this most difficult time and can never thank them enough.

Sinclair Gore, Honor’s dad.

Monday, 25 July 2011

An evening with the Aber Valley Welsh Male Voice Choir




On Monday 18th July, The Sick Children’s Trust held an evening with the Aber Valley Welsh Male Voice Choir at RGS Newcastle.

The 40-strong ensemble performed a mixture of traditional and contemporary songs including Nessun Dorma, Bring Him Home and the Rhythm of Life. The choir were supported by Morpeth based soprano Rachel Dyson who thrilled the audience with her beautiful voice, performing a mixture of romantic arias and songs from My Fair Lady/

The audience thoroughly enjoyed the evening, not just for the wonderful singing but for the unique sense of humour the choir added to the event. We hope to work with the choir again when they return to Newcastle upon Tyne in 2013.

The event, sponsored by Ward Hadaway Law Firm and hosted by David Haley, was a great success and raised £1200 for our ‘Home from Home’ Crawford House at the Royal Victoria Infirmary in Newcastle upon Tyne.

With thanks to the following who kindly donated raffle prizes:
Dabawal Restaurant, Sainsbury’s Cramlington, The Demon Barber, Cake Poppins, Tyneside Cinema, Benfield Motor Group.

Thursday, 21 July 2011

The opening of our new extension at Stevenson House


Yesterday, The Sick Children's Trust held a party to mark the opening of the extension at Stevenson House.

We were joined by about 40 guests which was a wonderful turnout. Some of our key funders who contributed to the project were able to be there which was fantastic and they all raved about the quality of the accommodation and what we do as a charity.

Jeff Brazier had a great time and has promised to support us further. He enjoyed playing with the kids and made the families feel very comfortable.

We are so delighted that the project was completed on time and under budget and that we will now be able to accommodate an extra 150 families each year whose children are seriously ill at The Royal London Hospital.

Monday, 18 July 2011

Make The Children Smile Event 2011, by Heather Brown, Special Events Manager




On Saturday we welcomed 15 children and their parents to Rainbow House for a wonderful afternoon of games, magic and party food.

The families had all stayed at either our Rainbow or Guilford Street ‘Homes from Home’ whilst the children were receiving treatement at Great Ormond Street Hospital.

It was lovely to welcome them back for a fun packed few hours and to see them all laughing and joining in with the fantastic entertainer.

After some great games were played, everyone went down to the kitchen for party food where the kids enjoyed putting on a variety of hats, wigs and glasses.

Once the food had been gobbled up, it was back upstairs for the magic show which the children all loved. A particular highlight was the appearance of Mr Nibbles the bunny rabbit who totally stole the show!

The children all left with a pressie and a cupcake which were baked and donated by the lovely Lily Vanilli.

A huge thank you to the lovely Steph Docherty and Caroline Owen who donated this special afternoon to us. It was great to see them on the day and show them what The Sick Children’s Trust does.

Saturday, 16 July 2011

Theo's Story by Kayleigh Crann




At my 16 week pregnancy test my doctor noticed that there was an increased level of hormone in my blood so they sent me off for an ultrasound to check everything was okay.

It was here that I discovered that my unborn baby had gastroschisis, a birth defect which meant my baby’s intestines were sticking out through a hole in his abdominal wall. The doctors told me my son would need urgent medical treatment as soon as he was born as his case was more severe than normal - his intestines, bowel and bladder were all on the outside.

On 14 November 2010 Theo was born at the Royal Victoria Infirmary (RVI) in Newcastle.

Theo was in intensive care for three weeks. During this time there was nowhere to stay in the hospital, so we were very grateful to be offered a room at The Sick Children’s Trust ‘Home from Home’, Crawford House. After three weeks one of us was allowed to stay with him in on the ward whilst the other continued to stay at the house.

Theo had three operations in total, one when he was just four hours old, then another when he was two weeks old. It was a very stressful time, it was awful, I couldn’t even hold my baby until he was three weeks old. But thanks to the support of The Sick Children’s Trust at least we knew we were as close by to him as we could possibly be.

The staff at Crawford House were brilliant and gave us lots of support. Everyone was really helpful and it meant a lot to us to have accommodation close by to Theo. To have to travel to and from the hospital each day from Sunderland would have been very stressful and we wouldn’t have been close by if we were needed at short notice. It was one less thing to worry about and, most importantly, it meant we could spend every precious minute with Theo.

Because of the fragility of Theo’s condition, it was also reassuring having the phones in the rooms at Crawford House, meaning that the ward had access to either myself or my partner at all times, day and night, should, God forbid, anything go wrong.

The house was also very well equipped and really was like a second home for us. We could do our washing and cook family meals in the kitchen with other families in similar situations to us.

Theo was at the RVI for two months and the support we received from the charity during this time can’t be underestimated. Thankfully, he is back at home now and has made a full recovery, but we really appreciate all the help we received from The Sick Children’s Trust during one of the worst times of our lives.

Thursday, 30 June 2011

Our world was turned upside down in an instance


Our daughter Issey was born in March 2010, four weeks early. At the time everything appeared to be fine, she was doing very well and we were extremely proud parents.

At about six weeks old our health visitor came for a routine visit to our house in Norwich and noticed that her breathing was a little heavy and asked us to book an appointment with the doctor immediately. Although concerned, we just thought that Issey had a cold and she had mucus that she could not disperse.

However, after seeing her, the doctor referred Issey for an appointment at the local hospital for some very thorough examinations. It was at this appointment that our world fell apart.



There we were told that our daughter had a hole in her heart and she was referred to cardiac specialists at Great Ormond Street Hospital. Within a month we found ourselves on our way to London so that Issey could undergo her pre-operation assessment before the big operation the following day.

That night, the hospital put us up in a hotel so that we could all be together, but after that they told us that they could only accommodate my wife Louise who could stay with Issey until she came home. I was left to find alternative accommodation. This was something that had never crossed our minds. I guess we just hoped that we would find something close by where we could all be together. I did not account for not only the emotional strain of the thought of being separated from my daughter and wife during an extremely stressful time but also the financial cost of staying at a hotel or bed and breakfast in central London.

Thankfully we were put in contact with The Sick Children’s Trust and its ‘Home from Home’ Rainbow House which is situated just round the corner from the hospital. They had a room that was available so the both Louise and I could be together whilst Issey was being cared for in hospital. Sandra the house manager was so understanding, helpful and considerate to our situation and she took a big pressure off us.

Being at Rainbow House meant we could focus on spending time with our daughter whilst being together through those initial difficult days after Issey’s operation. The house was very comforting with all mod-cons and was always clean and tidy and, given the circumstances, was a lovely, warm place to be.

The fact that we were given our own key so that we could come and go as we pleased was a blessing as it meant we could spend as much time as we wanted at the hospital with our little girl.

I cannot thank The Sick Children’s Trust enough. They were there when we needed them most and without them I do not think we would have coped as parents. I had never heard of The Sick Children’s Trust before and I guess that I probably would not have heard of them today if Issey had not been ill. However, having experienced what they do I can only reiterate what a worthwhile charity it is because what they offer to families at a very difficult time is so, so important.

Issey’s operation was a complete success and while she will be monitored for the rest of life, it’s like having a new baby home with us - she is now developing like a normal six month old. We are so grateful to all concerned in helping her on the road to recovery, including The Sick Children’s Trust.

Mark Carpenter, Issey’s dad

Wednesday, 15 June 2011

Sophie's story


At the beginning of January 2011, our baby daughter Sophie was rushed to Leeds General Infirmary (LGI) from our home in Doncaster via an Embrace baby ambulance.

At that time all the doctors could tell us was that her body had started shutting down and we were going to LGI cardiac intensive care as her heart was beating too fast and Sophie was at risk of dying. Over the next week Sophie got stronger but still the doctors could not pinpoint the cause of her sickness. After numerous scans it was found that Sophie had a blocked bowel and would require surgery.

During this time we stayed at The Sick Children’s Trust’s Eckersley House right across the road from the hospital. Before this we had never heard of the charity, but for the next month they played an integral part in our lives and the recovery of my daughter.

With the help of Eckersley House we were able to be at her bedside at all times to care for Sophie and bond with her as she was still only weeks old. The house also helped us to have a bit of stability and order during such a hectic period and cut down dramatically on the need for the 80 mile round trip every day.

Also it gave us a space to relax a bit, in the knowledge we were only a phone call and minutes away from the ward. The house manager, Jane, and her staff were understanding and always helpful and there to give advice and above all there to listen and talk about our situation. I cannot praise them enough for their kindness and the way we were looked after.

Meeting other parents in the house in similar situations and being able to talk to them about their child and their treatments was a source of encouragement and something we drew strength from in those early dark days when we didn’t know what the future held. Thankfully though, Sophie’s surgery went well and the medical team was happy with how it had gone.

Sophie is making excellent progress and is now out of any danger and has told us to treat her the same as a normal baby from now onwards. I can’t express enough my gratitude for this wonderful charity and everything they did for me and my family. It was not the best way to start the new year but thanks to the support of The Sick Children’s Trust things are starting to look up already.


By Ian Jepson, Sophie’s dad