Hey Miss K, Much respect to you for dealing with this obtuse and ridiculous disease. Yes - I most definitely know what it's like to be alone with all the existential anxiety that comes along with FA, but also how it can change ones view on life for the better. I'm proud to say that I've broken the mould regarding FA standards more than a handful of times - and I'm not the only one, much to the surprise of both doctors and researchers so don't loose sight of the prospect of a future. If you're interested in meeting other FA patients, I'd contact the Fanconi Anemia Research Foundation. That's how I met other FA patients for the first time (which was pretty nuts, if I do say so myself). Check them out at www.fanconi.org. They are an incredible resource and a gateway to others with our rare disease. Also, if you are into FB, you can find an adult group there as well: facebook.com/groups/193479920676276/?multi_permalinks=4767064249984464&comment_id=4773901465967409&notif_id=1634027452911007&notif_t=feedback_reaction_generic&ref=notif All the best to you, Miss K!

You're welcome - and thank YOU! Sorry I haven't responded until now - a bone marrow transplant got in the way ;)

Hi Desi Food - Thank you for your response. I have since been though that bone marrow transplant and added another 4 cancers to the survival list. That makes 11 x survival in all, with some cancers being worse than others of course (I need to make another video for sure). But I still consider myself lucky because each time I make it through another diagnosis. Another treatment. Then I feel like I have been given more time I kan spend with my wife, daughter, family and friends. Each survival is an opportunity to do more writing, make more music (which is just as important than any of the pile of medication I've been taking). And if I can help others realize that they are not alone with their cancers or with their Fanconi Anemia, then I feel like my diagnosis has meaning. Thanks again for watching and for your comment. Hope all is well with you and thank you for your own amazing food site!

My son was 9years old when he diagnosed fanconi he spent very tough time 3year. At that time he was bone marrow failure in 2019. In 2020 he had bone marrow transplant. He face 4th grade GVHD infections. He is now 13 years old his father donated him 75% match stemcells. Transplant is successful but he mostly hv so many infections in a month hv antibiotics

During transplant by the over dose of cyclosoporene he had some brain injuries he is taking livipil tablets regularly to control fits. His weight and height is low very slim n weak. I m a mother so worried to see him 😢to live like this he is a child even he can't realize what is happening with him n y? But always he do question to me y I m not like a normal child y I hv medical issues

Actually I m confused myself what can I do for him I can do only pray for him I m from India this treatment was so expensive for us we tried whatever we could do still the problem is not over

You r really very brave 👏its not such easy to face all this