Hi

Thanks for starting this thread and telling us about your daughter. It is great to hear that she has finally been granted an EHCP. 

I am sorry that you haven’t yet had any parents of children with Goldenhar Syndrome respond to your post. As you know Goldenhar Syndrome is a rare condition and Your Community is still very new. As the membership grows on here, we hope to soon see other members with connections to Goldenhar Syndrome keen to chat about their experiences too. 

If you need any other help or support in the meantime you can always contact our Helpline.

Take care 

Cat

Your Community moderator team 

H,

My son is 4 and was also born with Goldenhar Syndrome. He has Grade 3 microtia and full atresia on his right side and and a mild/ moderate fluctuating hearing loss on his left side so he too wears a BAHA. He also had quite a lot of other stuff going on as a result of the syndrome.

We were quite lucky in term of an EHCP and he was awarded his in May last year, so just before he started school nursery.

Hi,

My children do not have Goldenhar syndrome however there is a lady called Charlie Beswick who blogs about life with her son who has.  She is on social media under the name ''Our Altered Life' and has also written a book.

I imagine you will already have come across her but I  just wanted to share the information in case you hadn't.

Best wishes x

Hi @z83

Thats wonderful to hear your son has secured an ehcp before he starts school. That is one less to worry about.

my daughter has many other health factors too. She's finding it harder to walk any longer than 5-10 minutes at the moment, meaning we used a buggy for her, and she also suffers from scoliosis, has CHD, facial nerve palsy and dysphasia.

I hope you're all keeping well during this time :-) x

Hi @neveroffduty

Yes, I follow them both on fb and Instagram. :-) 

It a small community, trying my best to help my daughter meet people similar to her, roughly around the same age so that she's know she's not the only one, and also for me to speak to other parents too as Goldenhars syndrome varies greatly amongst one another. I do find most are abroad at the moment x

Hi 

my daughter is now 5 months old, and was born with goldenhar and several of the associated issues..bilateral microtia atresia so has a baha on a soft band, she also has spinal issues and breathing/feeding issues so has a feeding tube currently. What is ehcp? 

lots going on, loads of appointments mostly just me and her due to covid, uncertain what the future will bring for her but trying to stay positive.

🙂