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Charlotte - June 2009

At the moment we are very lucky Charlotte is in extremely good shape and, every day, we count our blessings that she is doing so well.

At present Charlotte is holding her haemoglobin level at around 11. When this level drops, then she becomes extremely tired and cannot fight illness off too well.

Charlotte is still struggling to gain weight. At nearly 5 her weight is still only 12.7 kilos (2 stone) the size of a 2 year old. Charlotte used to have a NGU (nasal gastric tube) but for numerous reasons it has been replaced by a feeding tube which goes directly into her stomach (gastrostomy). Charlotte has a healthy appetite and eats as a normal child her size would - plus extra chocolate, cream and olive oil. She also receives 675 extra calories, in enriched milk form, through her tube three times a day.

Despite her medical condition Charlotte is doing extremely well. If you have the chance to meet her you will see that she is a treasure (obviously we are biased being her parents). Charlotte has already endured a lot in the course of her short life but she still has a beautifully cheerful disposition- even when I am dragging her out of bed early in the morning to give her a tube feed before school!

Charlotte doesn’t realise that we are fund raising for her or that she is any different from any other child, apart from her special tube. This is why as Charlotte has got older and more aware, we try not to involve her in too much publicity. We would like Charlotte to live her life as normal as possible.

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Here is a short text which really captures our sentiments as Charlotte’s parents


“I am often asked to describe the experience of raising a child with a
disability--to try to help people who have not shared this unique experience to understand it. It's like this...

When you are going to have a baby, it's like planning a fabulous vacation
trip -- to Mauritius. You buy a bunch of guidebooks and make your wonderful plans. Finally your plane lands. The stewardess comes in and says, `Welcome to Holland.'

Holland?' you say. `What do your mean, Holland? All my life I've dreamed
of going to Mauritius.' But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place.

It's just a different place. It's slower-paced than Mauritius, less flashy
than Mauritius. But after you've been there for a while and you catch your breath, you look around and you begin to realize that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Mauritius, and they are all bragging bout what a wonderful time they had there. And for the rest of your life, you will say, `that's where I was supposed to go. That's what I had planned.' But if you spend your life mourning the fact you didn't get to Mauritius, you may never be free to enjoy the very special, the very lovely things about Holland."

-Author Unknown-