... hi We are from Poland,we live in England.we have 2 years old daughter with achondroplasia.in 1 month time our daughter will has first operation by ILIZAROV...
Sorry about the amount of Spam we are receiving, I will leave it a few more day, but if this keeps happening, I will make this group a 'closed group' and...
Hi all!, Fin is 8 mths now and Im a little worried about his very slow progress. He still cant hold his head properly, just turning, cant weight bear on his...
Hello Kristina, I know how you feel. For ages, I felt that my daughter Terra (now 4) wasn't 'doing' anything. She was very slow in her development. She was...
Thanks veronique, your probably right, Fin will just come on in his own time but its frustrating for him not being able to do the same things as other kids his...
Hi Kristina, I am no expert in strollers. We felt that Terra wanted to see the world a bit more at 9 months and changed her pram in a stroller. The most...
hi this is common for achon jamie could not sit till he was over a year old and then not for long as he could not hold the weight of his head he still finds it...
Thanks for getting back to me. Thats it,fin will just go at his own pace, whenever it may be, thats fine, must remember his fragile little body and large head...
Hi Kristy, Monty's just 8 months and is showing no signs of sitting supported or unsupported. He is really happy rolling about all over the floor though! His...
Hi all I am sure this has been raised on several occasions however we are struggling to sort out DLA for our daughter and we have heard that there are many...
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lilyleonetti
lilyleonetti@...
Jun 29, 2011 3:18 pm
hi all just to let you all know our store little-achon.com is open for orders this friday 1st july!!!! so check us out at www.little-achon.com and see what you...
Hello Sean, It is a long and arduous job to fill in the form for DLA, BUT it is not impossible. The most important thing is to keep in mind the things that...
Hi Sean, Im currently going to a tribunal hearing over this issue. When filling out the report stick to the medical jargon and bullet point every single...
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Randa
rgowiely@...
Jul 1, 2011 4:34 pm
Hi Guys, Just thought I would drop you all a quick line to say we have updated our facebook page with our latest 'Back to School' range. We have been very busy...
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lilyleonetti
lilyleonetti@...
Jul 2, 2011 4:46 pm
hi everybody despite a few hiccups with the website we are now live and open for orders!! remember we are a family run company and will be adding to the ranges...
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Andrew
andrew.r.gray@...
Jul 4, 2011 7:35 am
Can someone invite me to the group on facebook. Haven't found it. I am a new mum to Samuel who is 7 weeks and has been diagnosed with achondroplasia. I would...
Hi Kristina, My son Finley was diagnosed at 2 months old, he's now 8 months and doing great. First 6 mnths have been a whirlwind with so much to learn,but...
I am in touch with a couple of families who have a child with achondroplasia, both children are walking and despertely need shoes. Unfortunately, their feet...
YOU CANT GET THEM AND THATS THAT----im off to podiatry to try and get gracie some specially made as she is wider than an I fitting try through your docs or...
Hello! Some of you may know about a get together happening in Northamptonshire on Saturday 23 July. The venue has change to Pen Green Centre for CHildren and...
Genetics rang this morning to confirm Archie has Hypochondroplasia, not that we didn't know that already, but just nice to have proper diagnosis.......back to...
Had a phone call off Genetics this morning just to confirm what we already knew, Archie does have hypochondroplasia, skeletal xrays and blood tests confirmed...
Bet you are pleased to have a definte diagnosis. Rga have a booklet about hypo if you haven't got it already but very similar to achon- just 'milder':) hope...
thanks sharon, yeah feel a whole lot better now its a proper diagnosis think i'll send off for that booklet then xxx ________________________________ From:...
Hi everyone. Not posted since just after our gorgeous Georgia was born and we found out about the Achon. At the time, our world was in tatters. It was almost...
... Hi there, Just read your story and so beautifully wrote. I can relate to everything and felt very much like you did. Finley is now 10 months and although...
Hiya, I was wondering if anyone had any advice on what is a good Potty to use. Sophia is 19 months, and quite likes to try and wipe her own bottom when she see...
Hi, we've bought a variety of potties for Ian (2 years old) and we've also received one from our Council Social services department. the ones he gets on best...
