Born to be different - thread to discuss the show and the gorgeous children without the crap

[scaredoflove]

New thread for the show without the nastiness

Thurs 9pm

Hi neverbored. So sorry to hear you got MS. Ive had it 13 years now. Dd has severe quad cerebral palsy and severe epilepsy and is 7. She was tested for TS as she developed infantile spasms at 3 months.
Lots of luck for the future

buger. missed first half hour (at work - watching on 4+1). so good to see all the children and their families.

Thanks, we are proud of our little man, he struggles, but he does so well. MS has not been brilliant, my walking is really limited now and pushing William in his wheelchair is virtually impossible, he and I wobble short distances! However life goes on, William doesnt let us stop, he is always on the go. Riveninside, 13 years with MS, you are a pro! Infantile spasms are horrid, they were williams first seizure type, he has a rather spectacular spectrum of seizure types now.

blimey - see Hamish skiing! brilliant!

andnow Emily has made me sob.

have watched this programme and am amazed at the families courage and have utmost admiration.

neverbored - so sorry you have MS, but glad to see your family support the best footie team Lovely to see William's birthday party

We managed to cure dds seizures - she went on to develop lennox gastaut as so many do - with the ketogenic diet. Had a impact on her behaviour too (although not enough as she has just acquired an ADHD diagnosis too).
You ever heard of it?

What a wonderful programme, all the kids and families are brilliant. My dd has a similar condition to Emily and faces the same op in the future. You have no idea how reassuring it is to see how well Emily coped with it all and to hear her comments at the end, what a star!

Neverbored, sorry to hear about your health worries, hope you are getting support. Thank you and all the other parents for sharing your child's stories, it will help so many other families going through similar situations know that they're not alone.

I love this programme and like many of you have watched it from the beginning.

Thank you Neverbored for sharing your story with us, I think you and all the other families are wonderful. Best Wishes to you and your DD MercyMe it must have been such a relief for you to see how well Emily did last night

Watched the programme and was so good to see all the kids growing up.. Very poignant and profound in parts and spent a lot of time tearing up!!

Neverbored my dd has TS - she's 5 - had infantile spasms - and watching you with William is of course double edged.. We have been lucky to get control now ( mostly ) of seizures for now, but the future looks pretty uncertain of course.. We're just facing the arrival of some angiomyolipomas in the kidneys..
William does have a wonderful smile- I agree and I wish you luck for the times ahead.. Will be watching avidly in the weeks to come!

Neverbored - lovely to see you on here. William is a real star.

Emily had me in tears too. I can't imagine how that all must have been - going back to school after the holidays and suddenly being 'normal' (although I hate that word, having a SN child myself). Having that stress lifted is unimaginable.

hope I post properly as I have just joined mumsnet.dear NEVERBORED
born to be diffrent gives myself and my DD much hope, I have have aspergers syndrome and my lovely DD has difficulty at school and mobility issuses (which we are told will improve but will take some years of treatment,) some times life seems to be about appointments and pills and treatment , sometimes life is about fighting for services. I often feel to tired to give my DD the atention she needs. we count ourselves lucky as we have some good support in place but some times we forget how to be a family and have fun . Any advice

Hi All,

DJ angel, TS can be really tough and its an area where William seems determined to 'over achieve' - if there is a complication to have, then he normally has it! Seizure control is the hardest thing so the fact that you are getting better control of seizures is fantastic news. The kidneys are causing us concerns at the moment too, so yet another scan next week for William. I find the uncertainty of the condition really difficult. Like you say though its their smiles that get us through as parents.

hannahsmummy, it is really hard not to get lost in the endless battles that go with a SN child. We for some time now have had season tickets for our local team. They do a disability rate where a carer goes free. It is our 'normal' activity as a family (I don't like football that much, but I can shout at the players and I don't get arrested, its a great stress relief!!). Otherwise we spilt in two a lot. One with William the other with our daughter. So my advice would be to find something that you all get pleasure out of and comit to a regular 'date' with it. I know of a Mum who felt her daughter missed out because of her son's high needs so she did a deal with school and took her daughter out of school one lunchtime a week and they had fish and chips on a park bench, they both loved their special hour. I think sometimes we can try too hard. William's big treat is Dominos Pizza from the box in the lounge watching TV, and I love it because there is no washing up to do!

Everyone else, thanks again for watching and such lovely feedback.

I admire you so much Neverbored (sorry, hope that doesn't sound gushy!). You do an amazing job with William and his sister. I hope his scan next week goes well.

thanks for the advice , we are going swimming and macdonalds every wenesdsay from now on. xxxx

Looking forward to tonights episode.

To hear Vicky talking about Shelbie losing the fight is so sad. She's amazed me over the years with her energy and positivity. And now the diabetes on top

Love this programme. It's funny just how attached you feel to each of the children.

Weird seeing our hospital. Poor shelbie

Completely agree Hocus - Shelbie is such a gorgeous girl.

I am crying my eyes out watching this programme.......

Emily's mum sounds just like Jane Horrocks!!!

Just love Zoe.

I could have sworn that Zoe's mum just called her Sally??!!??

What totally fantastic children!! I am literally sobbing now!