BJ Williams Bone Marrow Transplant
Red Bank High School 2007
I'm Michael Williams, Billy Joe's dad and our family is seeking to raise funds for an up coming bone marrow transplant that he will be needing. Billy will have to go to Seattle Washing to children Medical hospital for a bone marrow transplantation. billy has been dianoised with I.P.E.X. syndrome a very rare disease (200 cases world wide).
I.P.E.X. Syndrome (immunnodysselectingregulation polyendocrinopathy,X link syndrome) is a rare disease linked to the dysfunction of the transcription factor FoxPE, widley know to be the master regulator of the Tcell lineage.
This autoimmunity is called IPEX and is the attack od the bodies on immune system against the body's own tissues and organs. Early age onset of this disease in males causes severe enlagement of the secondary lymphoid organs, insulin dependent diabetes, eczema, food allegies and inffections. There has been limited succes in treating the syndrome by bone marrow transplantion.
We are raising this money to cover living expenses and other nesecities that will be needed to for the 6 month period he will be staying there. His mom will be joining him to be by his side through the procedure. It will be a very long road for Billy. The whole process can take up to a full year before we truely see the full rewards.
We are trying to gather the funds as soon as we can. the doctors want to do this tgransplant during the summer months to minimize the risk for inffections.
I know this is short notice but we have only know aboout this for about a month now. We are trying to get as much of this by June 15th 2016
Your donation will be so gratefully appreciated by our whole family to hopefully allow Billy to lead a some what normal life without all these illneses. Billy if you ever have a chance to meet him would be the first to let you know quickly how much he aapreciates your donation.
I wanted to give you an update on BJ'S condition. He has had a few set backs during his stay in Seattle but it looks like things may be making a turn for the good. He had Host vs Graph Disease (HGV) set in in his skin and stomach. They have been able to treat his skin issues with a procedure called ECP that treats his blood with ultraviolet lights and that has worked extremely well. They are now treating the HGV in his stomach with a experimental drug. This was declined by the insurance company because it is considered an experimental drug, even though it's been out for 10 years. We were able to get it approved due to his lack of income. He had been in the hospital for 37 days but because of the drug he got released last Thursday. He seems to be making progress and we are hoping that he is on the last leg of this journey. To say Beth and BJ have been through it would be a understatement.'
I wanted to post this to give everyone a update on his progress.
I am with reluctance reaching out for any assistance you may be able to give to get them through hopefully these last few weeks of treatment. I don't have a timeframe or date at this time but will post it as soon.
Thank you again for all your past support and as I hear something I will make sure to post it.
From all of Thank You again and God Bless you.
The Williams Family
Again from all of us thank you so much for your prayers and thoughts.
Thanks again for helping Billy at a difficult time in his life. Bless you all.
How old is your son? Lee was diagnosed at 4 months, transplanted at 6 months and thriving