Joshua, now 13 years continues battling a life threatening disease.
Please help us if you possibly can.
Sadly, At the age of 3, Joshua was diagnosed with a rare life threatening auto immune disorder that affects less than 1% of the population.
For the past 10 years he has been in and out of the children’s hospital every 3 weeks for several days at a time to receive his treatment to sustain him and continue his quality of life but his body is beginning to reject his treatments and it is time to find a new treatment or hopefully an ultimate solution.
Recently he has been diagnosed with a secondary condition which will require additional treatment, anxiety and, regrettably, cost requiring more care and costs.
The costs are constant and the stress of living with a medically fragile child never ends, but with the support from family, friends and complete strangers we have been and are truly blessed.
We were able to take Joshua to Denver Colorado this (7/20) past week to be seen by top doctors in Hematology and immunology regarding his chronic wet ITP (Idiopathic thrombocytopenic purpura) and WAS (Wiskott-Aldrich syndrome). We have been advised that he needs to be seen by a Doctor in Boston from Italy that can help us get a better diagnosis and summarization to help point us to the right Gene Therapy program. So far all of the doctors consensus is that we will more than likely have to go to either London England or somewhere in Italy to try and save Joshua’s life.
We have to take Joshua to Boston to be seen by a Gene therapy facility at Boston Childrens hospital to be assessed and see if he is a fit for this highly specialized therapy. It is highly unlikely but in Boston through a new research program utilizing tests that are done in European labs we can hopefully get a better plan in place. If he is not a fit since the research is new and has only been around for about a year and a half we will then have to take him to London England to be seen by Gene therapy doctors there. Since they have been doing gene therapy there for almost 20 years now and have more options and testing available the doctors feel that this is our best bet. These trips are critical to helping find new treatment options that can lead to more promising outcomes.
We are hoping to postpone or delay either a bone marrow transplant or a stem cell infusion in the near future as a last resort due to the high risk of complications and high rate of death. If the Immuno and Gene therapy are not an option or do not work then we will have no choice but to do the bone marrow transplant. Unfortunately at this time there is no bone marrow match for him in the registry out of the 13,000,000 donors, another reason these trips are so key for us. They will point us in the right direction and help us to get Joshua into a gene therapy regiment in Boston, or as a last resort in the UK this year if at all possible. We will exhaust all avenues in order to prolong and increase the quality of his life.
Those who know Joshua are inspired by his positive attitude and
joy for life. He is a smart, funny, brave and courageous young man who always has a smile on his face.
At this time, we would like to ask for a small donation to help us travel to Boston to meet with the specialists and most likely to England for treatment if that is what God has in our plan. These trips may be life saving for our son for which no sacrifice is too great and I know through the kindness of Family, Friends, and complete strangers this will happen.
Thank you very much.
Sinerely,
The Hamlins
