My mother never sent blood to the NIH

I’m so upset I can’t even write about it right now.

It’s a million dollar study for David and I, all set up for free,

and all I need is one vial of mother’s blood, and she didn’t even bother to call the doctor, let alone send a vial.

After promising me she would take care of it.

As upset as I am right now, I’m also shocked and moved that the doctor at the NIH hasn’t forgotten about me, and even more amazed, that he’s still willing to do the study, if my mother will just send her blood.

How do I handle this? Attorney? Facebook? Scream from a bullhorn on CNN how my very own mother wouldn’t give one vial of blood for a study for her grandson?

I can’t talk about it any more right now. This is so awful. It’s a miracle they’ll still take it.

(Or perhaps the fact they’ll still take my mother’s blood, demonstrates beyond a shadow of a doubt how rare my case is, and how much I’ve suffered over the years. This doctor didn’t forget about us. Even if my own mother can’t be bothered to spend one afternoon taking care of this, this doctor still cares.)

Attorney? One more plea? And here I naively believed after a few promises “I’ll do it Tara”, it must have been handled.

I mean–who would let their own child be hospitalized multiple times year after year, and not give one vial of blood to help find the solution?

Let’s pretend for one itty bitty second she just got distracted. Let’s give her the benefit of the doubt, that’s what happened.

Otherwise, I’m going to sue sue sue. And then go to CNN. Own mother won’t give blood for rare disorder study for her own grandson.

Not for me. My life is already so buried in health problems, I feel lucky to just be alive.

For David.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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