ACC and NF1 - Agenesis of the Corpus Callosum and/or neurofibromatosis

motherscuffer

Hi, 

I wondered if there are any parents of children with Agenesis of the Corpus Callosum and/or neurofibromatosis here? My 4 year old son has both conditions and it would just be nice to talk to someone with shared experience. 

Corinne x

Sam_Alumni

Hi @motherscuffer
I dont think we have any parents with children with these specific illnesses and so I have asked on twitter and will share any responses back to you.

motherscuffer

Thank you, there are specific charities for the condition, but I thought there might be people here too. 

motherscuffer

Sam_Scope said:

Hi @motherscuffer
I dont think we have any parents with children with these specific illnesses and so I have asked on twitter and will share any responses back to you.

⬆️⬆️⬆️

saxgirl

Hello I am 46 and I have dysgeneasis of the corpus collosum and I have managed to lead a fairly normal life, I have 4 GCSEs and a daughter partner and friends and have gone on lots of journeys of acceptance of the disability.

i also play the piano and speak foreign languages and enjoy travelling, swimming and knitting

motherscuffer

saxgirl said:

Hello I am 46 and I have dysgeneasis of the corpus collosum and I have managed to lead a fairly normal life, I have 4 GCSEs and a daughter partner and friends and have gone on lots of journeys of acceptance of the disability.

i also play the piano and speak foreign languages and enjoy travelling, swimming and knitting

Hi! 

Its lovely to hear from you. I wish I could play piano and talk different languages, it sounds like you’re doing brilliantly. 

My little one is doing well, there are some struggles, but new things are learnt all the time! 

Corinne x

saxgirl

  

saxgirl

Great

Monika123

Hi my boy has got both conditions. He is nearly 4. I would love to hear from you