like your son, my child also has a lifelong disease that effects her everyday. I have sent in more evidence again with the birth certificate, they requested the birth certificate and I thought I might as well cram more stuff in the envelope. its bloody horrendous your son has been declined.
my dc is the same height as her younger sibling, weighs less than children her age group, bleeds a lot from you know where, is weak and tired and collapses on the sofa/bed/floor from the exhaustion of the pain. We cant go anywhere incase the stomach aches and poo/diarrhoea/mucus explosions start, the meds have started having more control but shes infant school age and unfortunately still in nappies and frequently in a nappy as walking for more than 15/20 minutes can tire her out. shes going through so much clothes and bedding, a lot has to be thrown out as thats damaged it cant be put in the wash, so dla will help with this, plus assist with getting a better pushchair and buying nappies in bulk and so much more, my dream is to have the bowel under control so we can do more things, she talks about wanting to go soft play and beach, bless her. She cant even attend school as I dont want to put too much pressure on them, and her in pain crumpled in the corner and them having to change bloody and pooey nappies several times a day, Its been a real fight to get this diagnosis, this is the last hurdle.
i hope your MR gets through and you get what your son deserves, let me know how you get on, please. Sending you so much love.
and to everyone else, I am always reading and sending love and best wishes with positive outcomes for all