..Molly's fix me fund
Thank you for visiting our page. I've not really known where to turn in the last few years, I've just been watching my already ill daughter become worse and worse to the point that she is now in a wheelchair. I am so grateful to the tree of hope taking Molls in to their childrens charity, its time after 16 years that Molly was fixed. her whole childhood has mostly been spent indoors poorly, in the hospital or just missing out on the things that kids should be able to do.
I have basically kept molly alive throughout her childhood with endless efforts of physiotherapy preventing pneumonias from taking hold, getting her to hospital when she was really poorly,she has been so poorly on occasions even her reception teacher had to give her physio at lunch time just so she could breathe through the afternoon (she was 5), she would then phone me when it got too bad, moll would be slumped over her desk in a deep sleep with a hideous temperature and I'd go and collect her to go straight to hospital this was still going on when she was at the juniors and still happens now, I remember almost bursting in to tears in front of her head teacher because she was ill again and I just didn't know what to do or where to turn she was probably 10 at this point.
she has been like this every 3 to 4 weeks for her whole life. No one knew why she was so poorly despite an amazing amount of tests, her hospital notes are about 6 inches thick (and thats just one hospital)
Her body is now damaged and she is needlessly allergic to many antibiotics because she had to have them, undoubtedly they have saved her life many times.
Now we realise why Molly was like this, she has spent her whole life with an undiagnosed life threatening condition, basically her body could just not get better by itself even from a small cold, it would just develop each time in to a chest infection and chronic asthma or pneumonia .
When she was diagnosed although it was completely hideous I was almost relieved because I thought that after 14 years she would start to get better.
Although lucky not to have have found ourselves in a worse position (most adrenal insufficient patients are diagnosed in intensive care or through postmortem) the truth is she's got worse,
moll has now developed ME (myalgic encepholitis) which I thought I could control but she deteriorated and is now in a wheelchair (I promised myself that would never happen ) I feel it's getting out of my control and it's scary.
I want moll to have a good life from now on and feel like I've exhausted all of my efforts and ideas in making this happen. I want Molly to recover from this and we just seem to be making no progress.
I have to do something I cannot see her bed bound , I want her to work with me in a few years in her own little studio, I accept she will probably never have a full time job or lead an independent life away from us. I'd like to be proved wrong but realistically at the moment it's going to take a long time. She simply walked out of school one day this year without anyone noticing, that was her her last day at school, no cards no prom no goodbye nothing.
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