Rebekah's Happy Lung Fund

Hello my Name is Rebekah.  When I was a baby I had a PDA (patus ductus arteriosus) which DID NOT close. Normal babies in the womb have an opening between the two blood vessels leading to the heart but it closes once they are born and they can breath on their own and obtain their own oxygen.  Mine never did close.   If they had discovered this when I was a baby they could have fixed it right away but they did not discover it until I was 12, unfortunately.   Once they did discover this opening they went in and fixed it right away in hopes that the HIGH LUNG PRESSURE it had caused me to have would reverse but it did not.  Unfortunately, after the surgery, my Pulmonary Hypertension spiraled out of control.  I reached a point where I could not walk 5 feet without my lips turning blue before finally collapsing and being air lifted to Houston.  When I reached Houston I had zero air capacity left (my lung x-rays were just black) and I was finallly placed on the best medicine treatments that are currently availiable at this time.  Up until this time the insurance refused to pay for it because it is 100k a month. These medications are not a cure but they do allow me to breath- somewhat.   In the mean time my heart is very very humongous and this disease is destroying my heart as it continues to work so hard to pump against the extreme pressures.  Have you ever had a car with a bad radiator that can only go a little way before the engine gets hot and you have to stop so you do not blow up the engine? That is kind of like my body.

When I first got sick my mom lost it for the first 6 months.  I had to brush her hair like a old lady in a nursing home while she stared at the wall.  After about 6 months she decided she was going to find a cure.  So she spends all of her time studying Molecular Pathways and  trying to isolate the exact deficiency in my body which is causing my lung arteries to stubbornly insist on constricting.

For the last two years my mom has been following the research done by Stanford University concerning a drug called Bestatin (Ubenimex- in Japan/China) which was able to completely reverse Severe Pulmonary Hypertension in rats within 2 weeks. The problem was that the medication cost  about 300 dollars for 100mg-- that is about 300 dollars for 1-2 days worth or about 2,000 dollar a week.  We are not able to raise that much money (its very hard to raise money).

However in recent days my mom discovered a way to buy it from China where this drug is already approved and used to fight acute myelocytic leukemia.  In china you can buy an entire kilogram for about $3,000
(and yes it is perfectly legal and delivered right to your doorstep -incase your wondering).  While there are some legalities with buying pills overseas  buying chemicals direct from the manufacture is perfectly legal-- you  can buy this form right here in America but its very expensive which has made it impossible for us to obtain enough to be of any use.  However buy buying in bulk from China we will be able to get enough to be useful.

So this is the current path we have decided to go on.  Bestatin is a low-toxicity, oral small molecule drug that inhibits aminopeptidase and leukotriene A4 hydrolase (LTA4H)-- Long story short, we are hoping that it will stop the inflammation in my lung arteries.

While Bestatin is a currently accepted as a Orphan drug in the United States and clinical trials will begin in early 2016 for its use in the treatment of Pulmonary Hypertension-- because I am a minor I am shut off from being able to preticipate  in any clinical trials.  Due to the fact that there are very promising treatments and cures on the horizon -- but they all take years and years to get approved + the fact that doctors are in no hurry to actually provide medications that will cure and save lives + I am a minor and cannot partake in any of the clinical trials---  I have to find my own cure... otherwise I will die soon.  Unfortunately when you are diagnosed with a terminal or life-threatening illness nobody really values your life so if you want to live it is totally up to you to find a cure. 

So my current goal is to raise $3,000 dollars to purchase this Bestatin (Ubenimex) from china.

Below is the quote :


If you can help than please do because my time is running out and I do not know how long my heart will go on if I cannot unconstrict my arteries and take the pressure out of my lungs and off of my heart.