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Hello Oliversmummy,

congratulations on your beautiful baby.  My 4 year old daughter has classical PKU.  I remember exactly the emotions I went through when we first received the diagnosis but would reiterate what foufouka says… it gets an awful lot easier as time goes on.  My daughter is bright, bubbly and gorgeous.  She goes to ballet, is about to start school and loves going to friends' parties.  She has also been in childcare since she was 10 months old, so please don't think you won't be able to leave your son with anyone else, or that you won't ever go back to work, or that your life will be all about PKU.  It won't  Our daughter has exactly the same life any other child has,apart from the dietary restrictions.  We don't think about her having PKU anymore, she is just our little girl.

There are tough times, especially as parents, and the diet is hard work and a lot of effort.  Where do you live?  There should be support groups in your area that are invaluable.  We are in the UK (Kent) and there is a local support group as well as the national charity – the NSPKU.  It really really helps seeing older children with PKU who look and behave perfectly normally.   Parents of older children are also great sources of advice about recipes and coping strategies, I have used other parents a lot to bounce ideas and anxieties off!

The other emotion I remember feeling a lot just after the diagnosis was loneliness.   I felt I couldn't connect with other new mums who worried about silly things like their child not sleeping through the night or whether or not they should take them to baby swimming classes – that normal stuff all seemed totally insignificant to me and I couldn't connect with other mums.  I always thought they just don't know how much we have to cope with and what we are going through.  If you feel like this then please know this feeling will also pass, again as your child progresses and has exactly the same issues as other children, you gradually reconnect with normality again. 

Please don't worry too much about your son and try and enjoy your time with him as a baby.  I really regret all the energy I spent worrying – and for nothing.  It is a big shock but your son will have the same opportunities as any other child and will probably be extremely responsible from a very young age.  I did have the whole feeling of grief, and was upset that I didn't get the perfect child I had dreamt of – but as I have got to know my daughter over the last four years I realise she is more perfect than I could have ever imagined.

We are now trying for a second baby and we will be equally delighted whether or not it (if it ever materialises) has PKU.  It has taken us a while to get to this place, but that is honestly how we feel.

Congratulations again and please ask if you have any specific questions or concerns.


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