Thanks for taking the time to visit my JustGiving page.

Mason was diagnosed with DiGeorge syndrome when I was 20 weeks pregnant.  When he was born we were so relieved that he didn't seem to have any issues that were going to effect his health.  As time went on, he seemed to suffer with a lot of chest infections and he had what appeared to be severe eczema, but he was developing completely normally.  Mason was always so happy and loving, he never stopped smiling!!  

Mason was at home for the first 9 months of his life, but in January 2014 he was admitted into our local hospital due to dramatic weight loss and severe chest issues.  Mason spent 2 and a half weeks in our local hospital, he was then rushed to the intensive care unit in St Marys, Paddington.  He was put into an induced coma, this was such a terrifying experience that makes you feel completely helpless.  I don't think we'll ever forget the sound of the machines, even when you were asked to leave you could still hear the machines beeping in your head.

On the second day of being at St. Marys, they discovered Mason didn't have a thymus gland.  A thymus gland is like a school for the white cells in your body, as the cells pass through the gland they're taught what should be in your body and what shouldn't.  This is how your cells know how to fight infection and how your body creates an immune system. Mason not having this gland, meant he had no immune system and couldn't fight off viruses or infection.  This was also why Mason had such bad skin and struggled to eat, his cells had been attacking his body.  This condition is incredibly rare and life threatening, I don't know how to even describe how this news made us all feel.  We just had to have faith in the medical team and that our baby boy was going to pull through, we had to stay strong for him.  

Mason was in intensive care for 3 and a half weeks, this felt like an eternity.  Everyday a waiting game for some good news, praying that today would be the day they'd wake Mason up.  The care Mason received at St.Marys was faultless, they were amazing with him.  As soon as they found out Mason didn't have a thymus, they referred us to the Great Ormond Street team who became involved in Masons care straight away.  We had to have a meeting to find out what our options were for Mason,  it was either do nothing and hope for the best or put Mason forward for a Thymus Transplant research scheme that was being done at Great Ormond street.  We were given lots of information about the transplant and the process and what had been the results for the previous children that had had this done.  It was a scary decision, but there was no way we could sit and do nothing, we had to put Mason forward to have the transplant.

As soon as we'd decided this, Dr Austin Worth from Great Ormond Street came to visit us in person at St. Marys to meet us and explain what was going to happen.  It meant so much to us that Austin actually took the time to see us in person!!  That was just the start of the great care and compassion we received from Great Ormond Street Hospital. 

Mason was transferred to Great Ormond Street straight from St.Marys. We were put on Robin ward, straight into an isolation room where we spent the next 5 months.  The only people allowed in this room were Mason, his parents and the nurses and consultants who were there to care for him.  Everybody else communicated with us through the big glass window on Masons room and the intercom.  This took some getting used to, but Mason adapted really quickly.  He'd get excited every time family and friends would turn up, waving and being a cheeky monkey for his audience. 

The consultants at Great Ormond Street let us know when we got there that Mason needed to be in a much more stable condition before the transplant could go ahead, they wouldn't want him in such a long operation when he was this poorly.  The scarring to Masons lungs was severe and the amount of infection in them was also severe, which meant Mason was dependent on an oxygen machine. We knew we had a long wait in front of us as not only did they need Mason as healthy as he could possibly be but they also had to find a suitable thymus to be transplanted in to Mason. 

When a heart operation is performed on a child, the thymus is in the way of the heart, so the majority of it has to be removed and is then normally discarded.  The researchers of the Thymus Transplant are in contact with the heart surgeons so they know when a suitable thymus would be available for a child that's in need of it.  They then have to make sure the childs parents would be happy with this and make sure the thymus they receive is completely free of any infection before considering it to be used in the thymus transplant.

Masons health was very hard to keep stable, but the team on Robin ward did an amazing job of managing this.  Even though the medical records weren't always looking great, they seemed to be getting ever so slightly better.  You'd have thought they were perfect if you'd have seen Mason, he was a complete ray of sunshine, always playing and smiling and giving kisses and cuddles.  He wooed everybody that met him, including the consultants and nurses, his infectious personality captured everyone.

After getting our hopes up on a few occasions when thymuses were found, but then went wrong, the time was finally here for Masons transplant.  Mason was still dependent on oxygen and his lungs weren't great, but he was a lot better than he had been.  There was such a mixture of emotion, excitement that he was having what we hoped to be a life saving transplant and complete terror.  I can remember the walk to the operation theatre, we were holding him so tight.  Watching him be put under general anesthetic was heart breaking, I kept the tears in until he was under as I didn't want him to be scared.  The 3 hours he was in that operation felt like the longest 3 hours of my life, we just didn't know what to do with ourselves.  He had to be woken up in the intensive care unit, the sounds and seeing Mason like that again brought back scary memories.  He ended up having to spend a night on the intensive care ward to make sure he was ok but we were back to his room on Robin Ward the next day.  It's strange how that room became so much of a comfort and like home.

Mason was back to his chirpy self in no time but sadly two weeks after the operation he took a turn for the worst.  His breathing deteriorated massively, it was completely tiring him.  Seeing our happy go lucky boy like this was heart breaking, we just knew something was wrong.  They decided it best for Mason to go back to intensive care to help him a bit more with his breathing, unfortunately he got worse and had to be put back into an induced coma for complete breathing support.  All we could do was read him his favourite books, such as the gruffalo and the gruffalos child and sing him his favourite lullabies and hope he could hear we were there with him.  We were determined we had to get him through this, we didn't want to face the thought of the alternative.  Sadly a few days later our worst nightmare became a reality and we lost our baby boy.  The damage that he had to his lungs was causing him to have to work incredibly hard, it just became to much for him.

None of us are able to think or talk about that day, it's something you constantly try to fight out of your head.  We still haven't come to terms with it and I don't think we ever will, the pain is just to much.  No family should have to go through this and no child should have their life cut so short.  This is why as a family we are so determined to raise money in Masons memory for Great Ormond Street Hospital.  If Mason had been referred to them sooner we know he'd still be here today.  The care they gave him was out of this world and we couldn't be more thankful.  The research they do alone is life changing for children with rare conditions like Masons, so please donate and help them carry on creating a better future for our children.  

We thank you from the bottom of our hearts 

Masons family xx

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.