Iam aware that your child/grandchild have the same gene mutation as my son.
I was wondering if you could offer your help.
After attending our cf clinic on monday, our consultant has now said my son should no longer be considered as having cf, or atypical cf. I have then said I wish to stop treatment if this is the case. I was wondering if you could give me some information on your personal care plans and how your consultant views this mutation and how they medically treat the child. Also would it be possible to perhaps have contact details for the hospital and consultant involved in your case, so perhaps our consultant could discuss this rare gene mutation.
This is a very stressful time as Iam struggling to understand why my son has been given this diagnosis if its not the case. Any consultation between fellow people in the world with the same gene mutation would be very helpful and I feel is necessary.
thank you for your time and i really hope you can help.
katie
I was wondering if you could offer your help.
After attending our cf clinic on monday, our consultant has now said my son should no longer be considered as having cf, or atypical cf. I have then said I wish to stop treatment if this is the case. I was wondering if you could give me some information on your personal care plans and how your consultant views this mutation and how they medically treat the child. Also would it be possible to perhaps have contact details for the hospital and consultant involved in your case, so perhaps our consultant could discuss this rare gene mutation.
This is a very stressful time as Iam struggling to understand why my son has been given this diagnosis if its not the case. Any consultation between fellow people in the world with the same gene mutation would be very helpful and I feel is necessary.
thank you for your time and i really hope you can help.
katie