Lesleys story: Blackfan Diamond Anaemia
Dear Richard Yu,
My son was born with the rare condition Blackfan Diamond Anaemia and following a bone marrow transplant at the age of 11 his health has slowly deteriorated. Having had major surgery on his lungs and been tube fed for a number of years because of poor weight gain it has resulted in severe osteoporosis. Eventually he could no longer tolerate being tube fed into his stomach due to gastroparesis so he's now totally dependent on intravenous feed.
As you can imagine he has constant widespread pain which is proving impossible to relieve by any medication that will not have an adverse effect on his breathing which is already restricted, and the surgery on his stomach has led to nerve damage which now appears to be untreatable. My son, Dixie Pickles, is now 30 and spends most of his days in bed where he finds it most comfortable and has found heat treatment extremely beneficial for many years with the use of wheaties and an old hot water bottle he had as a child.
I came across your hot water bottles online when I was actually looking for an extra bottle so that he could use two at a time because wheaties wear out, they are not washable and do not stay warm long enough to give any real benefit. I must admit that I was reluctant to buy one to begin with because of the price but than I thought a 'worm' one would be a source of amusement for his birthday over a year ago and I can say it's been used virtually every day since then. We often laugh when he says it's one of the best presents he's ever had! The shape makes it perfect to either lay all the way down his spine or between his legs to give relief from his hips to his ankles and it's excellent at maintaining the heat for quite a long period of time. No doubt my son will find himself in hospital again over the coming months and he already takes in a blanket for extra warmth but does miss his bottle, I guess health and safety comes before comfort and well being but if necessary I would not hesitate to fill it at home and take it to him :)
My 2 year old granddaughter fell in love with it when she came to stay last year so I had to buy a pink one for her but I do use it myself now on nights when my hip is playing up and painful rather than taking tablets and it works a treat.
My son is awaiting the new cover with interest.
Many thanks from us both.
WHAT IS BLACKFAN DIAMOND ANAEMIA?
Diamond-Blackfan anaemia is a disorder of the bone marrow. The major function of bone marrow is to produce new blood cells. In Diamond-Blackfan anaemia, the bone marrow malfunctions and fails to make enough red blood cells, which carry oxygen to the body's tissues.
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