Mum to 36-year old with Severe CP — Scope | Disability forum
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Mum to 36-year old with Severe CP

ElizabethH
ElizabethH Member Posts: 4
Hi, I am Mum to Maddie, she has severe CP (though not as severe as a lot we have come across) she is now 36, we were given life expectancies from the day she was born, 6 weeks, 2 years, 5, 10 then they gave up until she sued the hospital where she was born and they had to give her a life expectancy. They opted on 48 for some reason. As Maddie is now a middle aged lady that needs everything done for her, I am more than happy to pass on any help, advice etc. I have learned over the years. I know that most information is learned from other families. There is a lot of official info out there, but it's personal experiences that really teach.
one big thing we recently learnt, Maddie has dysphagia and for many years feeding has been a chore for both her and her carers, i don't know why I did it, but Maddie enjoys the food that we eat but sometimes it's dry (fish and chips for example) so I used to use mayo, water or milk to soften. I now keep a variety of cup a soups in the cupboard and use them as sauces to go with certain foods, she enjoys her food more and a secondary bonus, extra calories for her! See, always learning with our children

Comments

  • ElizabethH
    ElizabethH Member Posts: 4
    forgot to say that as Maddie won her case, we are in the fortunate position of being able to employ carers and work a payroll, so can give a bit of advice 9well,my personal experience) about running one for up to 10 employees
  • suewithington
    suewithington Member Posts: 1 Listener
    Heya

     I was wondering what happed with your daughter as my daughter has. Quad choreoathetoid palsy and im sueing my local hospital

  • Steph09
    Steph09 Member Posts: 1 Listener
    Hello Sue,

    the long procedure of sueing the hospital where my boy was born is coming to an end, he is now nearly 8. We still unsure how it will go, as our solicitor has to prove without a doubt that they could have helped my little boy even though it is clear, he has quad CP, both our experts and the hospital experts agreed that if he would have been born 14 minutes before he would have been absolutely fine. our solicitor is saying that we have a 50/50 chance to win/loose our case in court. Good luck for your case.  

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