Welcome to Jamie's Journey ~ Destination America, and thank you for stopping by our page.I am Jamie's Mama, Sarah... Some of you will know me from my other pages: www.myspace.com/lilmissfitsy & www.myspace.com/hope4ourkids'Jamie's Journey ~ Destination America' is a new project currently under development. We are hoping to have everything underway very soon, and with the help from our friends make it very successful.My 2-and-a-half year old son, Jamie, has been battling a life-threatening mystery condition since birth, and despite numerous investigations, the specialists in our native U.K have been unable to reach a diagnosis for him, stating that whatever he has is very complicated, whereby he doesn't really fit into any particular diagnosis. With Jamie's health not improving and new things being thrown into the equation all the time, we feel that Jamie now, more than ever, needs to be seen by other specialists further afield, and that this is quite likely our only hope for getting Jamie the diagnosis we so desperately need, and the potential for a cure. At the moment we are unsure of what the future holds for Jamie, or even if his little life will be cut short. We cannot be certain how his condition may develop as he gets older or what other illnesses he may be predisposed to. We cannot even be sure right now that Jamie is recieving the correct or best possible treatment and care, as a vast majority of those decisions are based on speculation alone. The uncertainties of Jamie's condition are endless, and we are just desperate to find out what is wrong with our son, and how best to put it right.Since I first found out Jamie was ill, I have dedicated a huge part of my life to his cause, scouring the internet daily, continuously widening my knowledge and researching all the possibilities. To have an ill child is hard enough, but for my little boy to remain undiagnosed through everything we have been through is nothing short of heartbreaking. Feeling terrified every time he gets sick, not knowing how he might be affected or what to expect. Some people tell me that they don't know where I get my strength from - But I gain it all from Jamie. His courage, gentle nature & acceptance is amazing. His will to fight astounds me, but I'm so very grateful for it. I am prouder of him than you could ever imagine. I feel blessed that I was chosen to be his Mummy and to be able to take care of such a special little boy.But unfortunately all of that doesn't take away the fear that eats away at me almost constantly. I don't say it out loud much, but there have been times when we really thought we were going to lose him - not just neurotic thoughts, but real possibilities --- And without the current treatments that occupy so much of his little life, I guess its true to say we wouldn't have him, so I do thank God for every day. Every LITTLE milestone is MASSIVE to us, and it is such an honour to be able to share all of them with our family & friends as they accompany us on Jamie's Journey....and Boy! What a ride!!!Our next step is the hope of getting our little man investigated and evaluated by a team of doctors at one of the best Pediatric hospitals in the U.S.A, Boston Childrens. I feel that if they can't provide us with some answers and a way forward, then nobody can. My biggest concern is that we will not be able to meet the medical expenses envolved, as we do not have any form of medical insurance here in the U.K, so we are obviously relying on our ability to be able to pay.....which is why we are asking for YOUR HELP! We have the cost of flights and transport covered, and have been offered to stay with 2 lovely families in Boston...so we purely need to raise money to cover some of the medical costs incurred whilst Jamie and I are out there.With some help from our friends - who are wonderful by the way! - we are currently in the process of putting some fundraising ideas into practice, and hope that there are people out there who will see it in their hearts to help Jamie's cause, however they can, no matter how small.
We pray that we will soon be able to reach a long-awaited diagnosis for our little boy, and give him the chance of living a longer, happier & healthier life.****UPDATE***New Findings ~ A Diagnosis????***Seems that 2008 has been the year of discovery for Jamie....and now we have some new findings on our hands that have shocked me & my family...and made me more scared than I have ever felt before in my whole life.Recently the doctors here in the Uk have been looking into Jamie's DNA & genetics, to try to come up with some answers as to why he continues to be so poorly, and what might be causing it....remembering of course that he doesn't fit into any known diagnosis. We have discovered this week that there is a reason for that........Jamie has a deletion on his chromosome 3, which we were told in the past was quite complicated...but we didn't realise how complicated. We have been told that Jamie has a vital gene deletion that no-one before him has ever had, making him the FIRST & ONLY in the WORLD. This means that they have no real knowledge of it, the course the disease might take or indeed how best to treat it. Or even how long he might live. I am devastated and very scared. Although we now know what is causing Jamie to be so sick, we are still none-the-wiser when it comes to understanding it and what to do for the best. All we know is that it is affecting 88% of all Jamie's cells in his little body, and it is very serious. To add to that, Jamie also has another diagnosis of Diamond-blackfan anaemia, as he is missing that gene too.....which only complicates things further. He also has several other genes absent from this chromosome. I will try to explain the function of the missing vital gene as best I can....it is very complicated and I have found little information on it. We were hoping for the doctors to diagnose Jamie and tell us about his disease, but instead it will be Jamie teaching them!!Basically the gene that is missing is called the Transferrin Receptor Gene or TFR1 / CD71. It has a molecular function and is a protein coding gene / intracellular iron metabolism gene. It plays a critical role in cellular import of iron throughout the whole body, meaning that it basically carries iron to the cells that need it. For Jamie, it is missing so there is nothing to transport the iron to where it is needed. A very scary thought considering that ALL CELLS ARE IRON-DEPENDENT. The TRF1 gene combines with a substance called transferrin(a protein which transports iron to transferrin receptor from all over the body, which also removes organic matter and allergins from the blood serum) to initiate a change in cell activity. It basically makes iron soluble, regulates the iron levels within the body and transports and metabolises iron within a cell or between a cell and its external environment. It is a cycle that the human body depends on...and Jamie lacks it in 88% percent of his cells. Complete lack of it is incompatible with life. TRF1 is expressed in every cell...particularly neurons(brain cells) and Erythrocytes(red blood cells)...but it is needed everywhere...the liver, lungs, heart, brain, bone marrow, pancreas, kidneys etc etc...the list goes on and on. I feel like my little boy has been handed a death sentence, and we are very uncertain about his future. I'm petrified of what this disease may do to him...I'm so, so, so scared that his future will be filled with pain or that we could lose him at an early age. My God, that is something I cannot even bear to think about.So Jamie's little body is producing blood cells, but they are dying because they are not being activated by the iron, which means that iron is not getting to his vital organs, which in a sense makes him iron-deficient....yet, he has an overload of iron, because the iron is there but not being utilised as it should be. On top of that, because of his regular blood transfusions, he is building up even more iron....so he has MASSIVE iron overload, which again affects everything and puts him at risk for all manner of complications. For now, we continue the chelation therapy in the hope that it helps to decrease these toxic iron levels within his body. The doctors are consulting with other doctors around the globe....as little is known about Jamie's genetic mutation, and any treatments will be experimental as they have nothing previously to work on, other than studies they have done on MICE. So, he will be a human guinea pig.....My poor baby, he doesn't deserve this. I love him so much. I want it to be me...I want to trade places. I just want him to LIVE.If you do nothing else today, please PRAY for my son...pray that he can fight this and that the doctors can find a way of treating it...PRAY for HOPE, PRAY for STRENGTH, PRAY for COURAGE...for little Jamie and my whole family.OUR NEED TO GET JAMIE TO AMERICA IS NOW GREATER THAN EVER. THERE HAS BEEN MUCH RESEARCH DONE THERE IN RESPECT TO JAMIE'S CHROMOSOMAL MUTATION & WOULD ENSURE THE BEST POSSIBLE CARE OF MY BABY BOY & GIVE US THE HOPE WE SO DESPERATELY NEED....IF YOU CAN HELP, PLEASE DO...WE NEED YOUR HELP!!TO DONATE PLEASE CLICK ON THE PAYPAL LINK BELOW. THANK YOU.We have various other things being worked out at the moment in respect to fundraising so please keep checking back.This page will probably be under construction for a while, so please bear with us.Thank you!!!!
Jamies Journey ~ Destination America! Help save Jamie! http://www.youtube.com/watch?v=VrewTVFc0zE
This video was made by our very lovely friend, Alex. We love ya girl! xxx
JAMIE'S JOURNEY ~ DESTINATION AMERICA VIDEO. INFO & FUNDRAISING. MADE BY ASHLEY @ FINDING CURES ~ SAVING LIVES, AN AMAZING FRIEND WITH A BIG HEART. LOVE YOU SWEETIE. XXXX(Please click on picture to go to Jamie's Fundraising Page)Hi,Here is an exclusive preview of the items of jewellery Team Jamie will be selling as part of Jamie's fundraiser(Jamie's Journey ~ Destination America). Please take a look. We have some lovely items available, all with a HOPE theme....which we thought was ideal for this project and Jamie's cause. America really is this little man's biggest hope of getting a diagnosis and potentially even a cure for this horrible undiagnosed illness that he has battled with all his life. If you can help Jamie get to the U.S.A by purchasing something, then that would be wonderful. We have provided pay-pal buttons which bring simplicity & security...so if you are able to buy something, then please do & help this brave little boy get seen by experts in AmericaWe would love to hear your feedback on the items we are offering for sale, and what you think of them etc...so please feel free to drop us a line!Most importantly, please keep spreading the word for Jamie!Here are the fundraiser items....SUPPORT, CURE, COURAGE BANGLE @ $7.50 EACHINSPIRATIONAL 'FAMILY' TOGGLE BRACELET @ $10 EACHSTUNNING 'HOPE' GLASS PENDANT NECKLACES @ $8.50 EACHThank you for looking. Please remember to tell all your friends about us and this fundraiser & help Jamie...Thank you!Love Sarah, Jamie's MaMa. xxxx(Pls click on this picture to go to Jamie & Mum's personal page & read our story)TO DONATE PLEASE CLICK ON THE PAYPAL LINK BELOW. THANK YOU.
