Jake is 3 years old. When Jake was 4 months old , he was diagnosed with a very rare genetic mutation called X-Linked Hyper IgM. Jake's condition means he has no working immune system and very susceptible to infection and with a life expectancy of under 25yrs. And a bone marrow transplant is currently the only cure. He also has a new condition, which his consultants are almost certain of which is CTPS 1. (CTP synthase type 1), this means his body doesn't have T cells to fight off infection. His cells are dividing and multiplying 100 times over than they should be doing (similar to what they saw down the microscope from his brain biopsy, cells working overtime and bouncing out of control) it is a life threatening condition, and he is very high risk to infection
This condition is virtually unknown to many people. Jake's Immune System is not working as it should and cannot fight infections and bugs, he recently picked up a common bug called EBV which by passed his Immune System and attacked his brain, resulting in 3 tumors. With a life expectancy of just 25 Years, the only cure available for Hyper IgM is a Bone Marrow Transplant, with the hope that his body will accept and not reject it. In the meantime Jake will make many many trips to the hospital for treatments, MRI scans and bloods. He cannot go back to nursery, or interact with other children. Cannot go swimming, or to a farm, all his water needs to be boiled and he cannot be around anyone who has a cough and cold, due to a very high risk of infection. Jake is currently on the BMT register , and is receiving treatment to hopefully obliterate the tumors. WHEN he does , he will be admitted for a BMT when a matching donor is found. He will then be completely restricted and Isolated from visitors, except for Mum , Dad, me his nan and his other grandma. He will go through intense treatment, strong chemotherapy, and painful medication to remove his current Immune System and make room for the new incoming cells. He will be very nauseous, and will lose his hair. We, as a family are now ready and prepared for the next battle and we also know that Jake is such a strong little man who will beat this, no question. He has too, and he WILL, because we will not accept life without him, he is our world and more.
Jake has just had brain surgery to release the pressure of the tumors on his brain, followed by a 2nd surgery to fit a chest line and a T Cell donation from a donor in New Zealand.
Jake had another MRI scan today and doctors are hoping that the chemo has started to shrink the tumors. He is absolutely terrified, not of the scanner but of the medicine he has to take to sedate him, but he is so very strong and is fighting very hard.
Through all of this Jake is still smiling!!
I have set up this fund to ease the worry of finances for mummy and daddy , Mummy cannot go back to work now, and with only one low wage coming in, things are already hard enough for them, and with a little help and support, it will make life a little easier. I know times are hard for everyone and we really do appreciate anything you can give. I really do feel useless at the minute and need to do this for them, So please, give what you can no matter how small.
Thank you , Jake's NAN XXX