0 Miles (80.3 Total)
0 Minutes (12 Hours 28 Minutes)
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No running over the past couple of days, mainly work related. Won't bore you with the detail. Lardy Boy will return tomorrow with an early morning run in the cold as punishment.
However today is a very important blog because below you will find some words written for the blog by baby Enid's parents (Alex and Sarah). All 3 of them are very important to me and my family, as they are great friends and the reason why I am running another marathon. I will let their words speak for themselves, please do click the link above and donate, it is so important.
LB
XXX
“I have some very bad news for you”, the Consultant began. That was Christmas Eve 2009, and so began our journey with the Cri du Chat syndrome (CDC).
It’s a rare chromosome disorder, and as such the doctors couldn’t give us very much information. We were given a print out of a Wikipedia page and told to expect moderate to severe learning difficulties. And that was that.
Enid was just 10 days old and suddenly the world we had imagined for our baby girl was shattered. I don’t think you realise how much you unconsciously plan and think about the life for your child until it’s all taken away. Concerns about getting her in to the ‘good school’, wondering if she’d be good at sport or English, thinking what career she might want to follow. Suddenly everything fell in to a pit of irrelevance and we were left wondering whether she had any sort of future at all.
After leaving hospital, the support we have received from the NHS has been great. The trouble we have is the lack of syndrome-specific support available. When we were given the diagnosis only one nurse on the Special Care unit had ever come in to contact with a CDC child, and that was when she was training 25 years ago.
This is where the CDC Syndrome Support Group has been invaluable. As a starting point we could read information on their website and try to build up an idea of what the syndrome would mean to us in real terms. They also have a clinical advisory group from whom, for example, we received child growth charts that we could use to see how Enid was growing compared to the norm for the syndrome. Up until that point Enid was being compared on the standard child growth charts, on which she falls way below even the lowest percentile, leading to pressure from many health professionals. At 11 months old she is only now just going in to clothes for 3 month olds.
The most valuable thing for us offered by the CDC Support Group is the annual family weekend. Attending for the first time this year gave us a chance to actually meet other families affected by the syndrome, to talk to them about their experiences, and to see the range of disabilities Enid might face. We also heard talks from health professionals experienced in treating CDC children. If nothing else, for one weekend of the year we got to feel like a normal family.
Fundraising for the CDC Support Group is vital to its running. Being such a rare disorder there isn’t much awareness of the charity and its work, so funds each year are limited. However unlike larger charities, all the funds raised for the charity go directly to the work of the group. There are no big overheads, salaries and bonuses to pay, or TV advertising campaigns and such like. The work of the charity and any funds raised go towards further research in to the syndrome, raising awareness of CDC with health professionals and the wider public, and supporting families affected by CDC.
Enid is now coming on for a year old and I’d say we are still coming to terms with what it all means - for her, for us. Seeing her peers advance further and further ahead is very difficult. But equally when we compare her to many other children with difficulties we realise just how lucky we are. She is able to use her hands, she smiles and laughs all the time, and is very gradually learning to sit up; things that many other parents of disabled children can only dream about. We don’t know what the future holds, whether she’ll be able walk or to talk, will she ever achieve any degree of independence, so we try to focus on the now and making sure we give her every opportunity to be the best she can be, and we’ll worry about the what if’s and what might be’s tomorrow.
