The Charity spotlight: ‘Saying Goodbye’

The Charity Spotlight

~ Saying Goodbye ~

– Our story –

In 2011 when Zoe & Andy were just setting up The Mariposa Trust & Saying Goodbye we were expecting triplets, Alex, Eddie & Richard. These little bundles of joy were born at 25 weeks 6 days. At 2 days old Richard had a massive, catastrophic bleed to the brain. We were talking to the consultant and discussing it between ourselves and in the end decided to switch all the machines off. Someone this small should never need something as powerful as morphine to be comfortable. A few weeks later, only days after Richard’s Funeral. And the very first night we’ve spent at home in our own bed. We were called that Alex needed to be rushed over Southampton General.

More heartache than you can take?

He developed a very rare complication to the additive that was put in the breastmilk. However at first it was suspected that he had developed a condition  called NEC, which is very serious, it involves the bowels and is mostly seen in premature babies. The consultant, called Mrs Kittringham, told us point blank that if there wasn’t enough healthy bowel to salvage she would let him go right there and then. How do you look past something like this, when you only said your final goodbyes to one of your triplets and now it looks like the second of three might slip away?  However when the surgeon and her team opened him up they realised it wasn’t this NEC and it was something called a milk bezoah. This was a reaction to the additive ( fortifier ) in the breastmilk which got lodged in his intestine and ruptured the same. Luckily the surgical team were able to repair the damage. So Alex will never need his Appendix removed as he doesn’t have one anymore. Luckily the perf was more or less in the perfect position to cause as little damage as was possible. But as you can see from the pictures below he was tiny at the time of the surgery. Operating to repair his intestine must have been like sewing two pieces of spaghetti together and then it had to be absolutely tight without any leakage whatsoever. That was end of August, beginning of September.

More things for Alex go through

As if that wasn’t enough, before he could come home on his actual due date in November, he was back at Southampton General to have what they call a ‘balloon valvuloplasty’. He was one of the smallest babies this procedure was ever done via keyhole surgery. It basicly is a heart valve that is too narrow and needs widening. So they stuck a tiny rod up there with a teeny tiny balloon at the end and blew up until the valve itself expanded.  Here are some pictures that show just how far Alex has come in these 5 years. 

The One we call Steadie Eddie

I haven’t really talked about Eddie. Apart from the fact there were some complications due to him being born at 25 weeks he didn’t really get the memo that he was premature. I mean he constantly kept surprising everyone with how unphased he seemed by how everyone expected him to behave. It detracts in no way from how great Eddie’s achievements are, but we hardly ever had to really worry about him and his development.

Twitter as Therapy and the wonderful support of Zoe & others. 

So I, at the time everything was happening, was already active on twitter and was venting about things that were happening. The first people I really talked to about this were lovely and one of these was Zoe. Talking to her was really helpful. Over the years she got infinitely more involved in this and had so much on her plate, but still always makes the time to talk and send messages. Which culminated in her actually asking us personally if we wanted to attend the big fundraiser at The Savoy.

As I was saying the great support I got from Zoe and others on Twitter during that time always makes me smile and think that there is hope for the human race yet.

Saying Goodbye & The Mariposa Trust

These days the charity helps so many people, of all walks of life. There are remembrance services at churches all over the country, and they have started in other countries as well. Zoe has been on Tv and on the radio quite a bit in recent times. She has also been honoured by having been invited to ‘No 10’.

Until last year in May i hadn’t actually met Zoe, Andy, Bronte & Esme. With all the publicity and accolades Mariposa and therefore Zoe & Andy have achieved they have managed to pull off something spectacular! This fundraising event at The Savoy Hotel in London. We were there last year and apart from the fact that we had absolutely nothing at all in common with most of the other people on our table it still was a most amazing night! Being the Savoy you can imagine how spectacular the food was. The entertainment was good as well. We’re all booked up to go to the next one which will be held again on Saturday 6/5/17 at The Savoy. And apparently one of our favorite stand up comedians will be there: Milton Jones. The Mariposa Ball is also where we met the famous Dr Ranj. He really is a lovely chap. 

Now the latest way to raise money for Mariposa is by buying clothes at the self entitled Mariposa Store. In this new venture there are some lovely sweatshirts, t shirts and full zip hoodies available. 

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