steesh07 Posted June 3, 2016 Share Posted June 3, 2016 I know that there is a handful of older posters on this forum and just wanted to raise a bit of awareness about a disease that has affected my son recently. Mitochondrial Disease is the working diagnosis my 17 month old son has been given, he had a severe episode a couple of months ago and ended up in resuscitation at the local hospital and we hadn't had any idea what was happening or what caused it and if he would even survive. Me and his mum were shocked at how a perfectly healthy child could deteriorate so quickly and it baffled the doctors too. But after a lot of tests (MRI's, CT's, X rays etc) we were given the bleak diagnosis of; Mitochondrial Disease. To which we researched extensively and were emotional for days and weeks to come (we still are now). Taylor has been doing well recently (he lost his walking, eating and had severely heavy breathing) and has gotten back to being his usual self for now. But I would just like to try and raise awareness of the disease among you guys because it gives us hope that research and funding is made available for finding a cure. Local Paper: http://www.chroniclelive.co.uk/news/north-east-news/meet-newcastles-mystery-boy-who-11407647 Lilly Foundation: http://www.thelilyfoundation.org.uk/ Thanks to anyone who takes time to read this thread. Link to comment Share on other sites More sharing options...
Dave_Scott Posted June 3, 2016 Share Posted June 3, 2016 My greatest wishes and prayers go out to your son, man. Stay strong! Link to comment Share on other sites More sharing options...
Mootinie Posted June 3, 2016 Share Posted June 3, 2016 That article was so wonderful, your little boy is a superhero! All the best, I can't even begin to imagine what you're going through. Link to comment Share on other sites More sharing options...
Russelrules44 Posted June 4, 2016 Share Posted June 4, 2016 You are a saint man. Going over here to help your kid down on his luck, that is a worlds beyond epic of you. Hope he gets the treatment he deserves and that he spends many wonderful years on the Earth. Link to comment Share on other sites More sharing options...
Uncrewed Posted June 4, 2016 Share Posted June 4, 2016 Your son is truly an inspiration to us all. As both Dave and Mootinie have said, best wishes to all of your family. Link to comment Share on other sites More sharing options...
steesh07 Posted June 4, 2016 Author Share Posted June 4, 2016 Thanks for the well wishes guys, it's been a hard couple of months. Just a little up, despite picking up incredibly well, Taylor still shows signs of Mito as he has had a viral infection for the past 4 weeks where he should only have it for a week before it clears. But if that's the worst it gets for now then I am glad. I will post more updates in the future, I guess this is my way of slowly coming to terms with it. Link to comment Share on other sites More sharing options...
steesh07 Posted August 30, 2016 Author Share Posted August 30, 2016 Massive update on my sons progress, we have been given some brilliant news. Where we thought we'd lose our some at stage, we have been told that he has a Biotin Deficiency, where with treatment (tablets for the rest of his life) he can live a normal happy life. Me and his mam could not have wished for a better outcome. Link to comment Share on other sites More sharing options...
moon_lit_tears Posted August 31, 2016 Share Posted August 31, 2016 <blockquote data-ipsquote="" class="ipsQuote" data-ipsquote-username="Russelrules44" data-cite="Russelrules44" data-ipsquote-contentapp="forums" data-ipsquote-contenttype="forums" data-ipsquote-contentid="41825" data-ipsquote-contentclass="forums_Topic"><div>You are a saint man. Going over here to help your kid down on his luck, that is a worlds beyond epic of you.<p> </p><p> Hope he gets the treatment he deserves and that he spends many wonderful years on the Earth.</p></div></blockquote><p> </p><p> Not at all. That's what parents are meant to do. It doesn't make someone a saint. I admit it's great.</p><p> </p><p> </p><blockquote data-ipsquote="" class="ipsQuote" data-ipsquote-username="steesh07" data-cite="steesh07" data-ipsquote-contentapp="forums" data-ipsquote-contenttype="forums" data-ipsquote-contentid="41825" data-ipsquote-contentclass="forums_Topic"><div>Massive update on my sons progress, we have been given some brilliant news. Where we thought we'd lose our some at stage, we have been told that he has a Biotin Deficiency, where with treatment (tablets for the rest of his life) he can live a normal happy life. Me and his mam could not have wished for a better outcome.</div></blockquote><p> </p><p> I'm glad for your good news. I hope your son lives a long happy life. Having to live with something that effects your life is going to be tough, but he seems to have a tough spirit already which means he will be a strong happy young man soon enough.</p> Link to comment Share on other sites More sharing options...
Mootinie Posted August 31, 2016 Share Posted August 31, 2016 That's fantastic news man. <img alt="" data-src="//content.invisioncic.com/g322608/emoticons/smile.png.142cfa0a1cd2925c0463c1d00f499df2.png" src="<___base_url___>/applications/core/interface/js/spacer.png" /> Like you said, given the hand he was dealt I feel like that was the best outcome you could have asked for. One day I'm sure he'll think that if he can beat this, he can beat literally anything and that's such an inspiring, empowering thought to be blessed with. Link to comment Share on other sites More sharing options...
Dave_Scott Posted August 31, 2016 Share Posted August 31, 2016 That's great stuff man! Lots of unfortunate things in this world so we need to be grateful for every single blessing we have! There's always a plan for everyone and I'm glad the one for you has so far turned out to be something fortunate for you and your son. Link to comment Share on other sites More sharing options...
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