burbschook

Helo everyone. I've been a spectator of this forum for over 3 years. This is the time I've been in my wonderful home of New Zealand from the UK. From the beginning, a situation developed back in England with my twin brother. His eldest daughter(18 at the time) started a slow decline in her motor functions starting with her loosing strength then the use of her hands. Gradually & at an agonisingly slow pace all her movements regressed to her becoming bedridden,loosing her speech & virtually that of a baby in all aspects. A consultant at Kings, has been plugging away at what this condition is & even corresponded with experts in motor neuron disease all over the world.It seems she has an extremely rare condition (it has a name that we've given up on trying to pronounce) where the brain has suddenly switched it's control off. Now all sorts of test have been done for the obvious candidates but there is nothing medical as such. Her brain has simply stopped sending messages. They then started with specialist physios to teach her brain to connect with her now atrophied body to work again. At this stage still, this condition is rare & any treatment is guess work. Unfortunately, my gentle niece suffered some harsh therapy so my brother & his wife took over with their own kind. Believe it or not, it was fun park rides. They worked all the hours to raise funds & went on month long holidays.My niece showed responses!!! She laughed, would crinkle her eyes as my brother would take her on another nail clencher. Three years on & just this week, my brother phoned to tell me that they visited the grandmother with a surprise. As she opened the door, my niece was standing there. Well granny burst into tears. My niece has a long way to go, but she's talking (quite a chatterbox actually) she can stand & toddle a few steps (her feet have clubbed)she can support her neck & head with the aid of special high chair,her hands are curved but she's trying to use them together to hold a spoon & she wanted to talk to me on the phone. It was held for her as she whispered how much she misses me but knows I'm happy in my new home so would I keep emailing her photos & stories of our life here. Well, I just listened with that damn lump in my throat, the welling up in my eyes (didn't need to see anyway) as this amazingly brave child chatted on as if it was the norm. The odd uh uh, of course & will do was all this normally verbose individual could blub out.
A heart aches with the distance apart from our loved ones doesn't it? But the power of our feelings for those we left is stronger. This is our little christmas miracle. Thank you for taking the time to read it.

Sue

That is wonderful, I wish her best wishes for her continued recovery.

Merry Christmas to you and your family.

MnB

Thank you for your heart warming post, very best Christmas wishes to you & your family and I hope 2011 is a wonderful year for you all!
Big hugs
B x

BEVS

Hi Vikkichick.

Is the OH still plumbing ? Mine is still doing the hard labour

Lovely to hear from you & it's especially kind of you to think to share this special moment with us all here. Thanks for sharing. It is, as you say, a lovely Christmas miracle. May this be the start of a progressive recovery for her.

Merry Christmas
& wishing you an
amazing 2011.

burbschook

What kind responses & I thank you all very much.
Oh Bev, it's been an age hasn't it?
OH gave up plumbing about 6 months ago to take up class 4 truck driving. This is something he never thought he'd be doing & loves it. There's a great gang of blokes. The change in tack was due to the economic climate & everyone cutting it to the bone to get the contracts. TBH, we've been there & done that & it's time for an easier way of life.
A very merry christmas to all & to a hopeful new year.

louloumama

Oh my ...... that is one heck of a wonderful christmas miracle for your family.... wishing your neice a continued recovery and heres to a very happy christmas and New Year to you all

xxx