Ali Parcell-Jones (mummy to Freya, aged 11 months, unilateral microtia)

Hi all, I just wanted to write a post with an update regarding Freya. With her first birthday approaching very quickly (this Sunday) it has been a time for reflection and this last year has been full of mixed emotions. Lots of fun, love and laughter, lots of worries, lots of hospital visits and tests (!) And lots of amazing moments watching our daughter grow up. Today we had what will now be our final appointment with the paediatrician. All the tests that we have had recently (heart scan, spinal X-ray, eye test) have come back fine and Freyas condition has been diagnosed as an isolated case of microtia, atresia and hemifacial microsomia. Our paediatrician is happy that we are now dealing with the correct people for any future concerns and has said he will always be there for us if we ever need any further help. We really lucked out when he came visiting us the day Freya was born. We know we still have lots of challenges ahead but for now it is just audiology and ophthalmology for the next few years together with the termly visits from the hearing impairment service. There is this amazing sense of relief knowing all is well and it couldn’t have happened at a better time just before she turns 1. I know I thank you guys quite a lot but I wanted to say a big thanks again for all your help and support over the last year. Your knowledge and guidance has really helped me and Mark through all this. I’d also like to do a big SHOUT OUT to Liz who founded this group as we really don’t know what we would’ve done without it. I also hope that I have been able to pay some of that good advice back to others who have joined this group over the last year. Best wishes to all and no doubt I shall be back on this page very soon seeking more advice and maybe answering a question or 2! x (October 2012)

Hana Thalova (mummy to Louis, aged 2, unilateral microtia)

I do think that the great thing about this group is learning more about microtia and about ssd. and hopefully this will allow new mums to push their doctors from early on. Plus hopefully it will lead one day to nhs having better understansing on ssd, which will allow it to have better policies. (August 2012)

Claire Johnson (mummy to Luke, aged 7, unilateral microtia)

Thanks Liz found some really useful booklets via this link i just wish we had been given these leaflets when he was a baby as there was no support. I am so glad your page exists thank you for all that you do (June 2011)