hiya lisa...good to hear from you...dylan is doing as well as can be expected at the moment. just had a muscle biopsy and skin biopsy last week so we are trying to get over that at the minute.. your feelings are perfectly normal lisa...never ever think of them being silly..i am exactly the same...we had a family gathering the other day where all dylans cousins were running around without a care in the world and my baby was trying so hard to catch up with them and even though he couldnt run as fast or as quick as them he had this great big huge smile spread across his face...i just looked at him and burst into tears...there is not a day that goes by that i dont cry but i have to wipe the tears and stay strong for dylans sake...please remember to take time out for yourself lisa...am always here if you wana chat, to let off steam etc...take care hun,,,,paula...p.s. if you want my phone number to chat txt etc just ask...we all have to try and help and support each other...
hi lisa how are you ? thank you so much for adding me as a friend on here..my son dylan who is 6 has been diagnosed as having duchenne in the past while so i know exactly the way you must be feeling..it is such a blow when we initially find out and even more so as we see our son struggle with things..we are comp,letely and utterly heartbroken but we see our son as a wonderful gift and we would not change him for anything..how is your little boy doing? if ya ever wana talk etc then please feel free to get in touch..kind regards
hiya lisa thanks so much for adding me a s a friend..how are you feeling? and how is your little boy doing? my son dylan is 6 and although we have known bout his condition for past while it is still a massive shock and it is totally heartbreaking...please feel free to get back in touch and we can talk some more..love to u and ur son...xx
Hi Lisa, so sorry to hear about your son. Its almost impossible to take in and understand how or why this has happened. Just know that your not alone in this. It takes a long time to get to grips with and adjust. I have two boys Robert 11yrs and Jack 8 yrs both diagnosed 3 yrs ago on 14th July. I take each day as it comes some days are good and some days not so good. The most important thing is to just enjoy your boys and try not to get too swept away with everything else. The support groups already mentioned are a great source of help and information. My thoughts are with you. Joanne x
Hi lisa. So sorry for your sons diagnosis, there's a lot of emotion and information to deal with at the same time. (sending hugs)
there are lots of people to help support you, as clare says action duchenne is a great place to start. There's also the duchenne family support group and muscular dystrophy campaign. PPMD community and facebook : )
best wishes Anne x
sorry to hear about your son,it is devastating news to get ,when they on the whole seem ok.I took Lewis to see about flat feet and i came home with Duchennes last July,and it takes a long time to adjust and accept.I am only beginning to accept it now,and ready to fight for him.Have you joined Action Duchenne?They are great as well.It is exciting times and hopefully there will be a treatment soon for the boys.if you need to talk just post on my wall,u go through that many emotions,over whelmed with appointments.