Help Child w Rare Genetic Disorder

$1,815 of $5,500 goal

Raised by 40 people in 31 months
I'm trying to raise funds to help my son, David Noah, get the answer to his mysterious illness.   Noah was born with a rare disorder that causes him to get infections without a fever or an elevated white cell count, and he needs more testing to get to the root of the reason why so we can fix it.

I'm very grateful for any kind of donation, and I will post updates, including the results of tests along the way too. We're lucky there is a chance we can fix Noah now so he can lead a normal life.  Thank you very much!!
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13195041_1469389213.9945_funddescriptionRecent update:

Things are going well right now. Noah has only had one bad sinus infection and one pink eye infection, and it took awhile to get rid of them but he got through it. I am still looking for a lab that can test Noah's C2 gene function, a doctor is supposed to be looking into it (Dr. Derek Wong at UCLA) but we know how doctors can be sometimes....it's not that they don't care, it's that when you get to the upper worlds of research medicine, they have kids that are going to die in an hour without help, so a kid with a strange but manageable (with medical care) immune deficiency doesn't get quite the same urgency.

(It's understandable, but frustrating for a mom who wants her son to avoid a rough road ahead.)

I've started Noah on an intense vitamin regiment to help boost his immune system, in addition to his daily antibiotic. Noah now takes Cod Liver Oil, B-Complex, C, Calcium and Magnesium, and a Cranberry Extract pill as well. Cranberry Extract is usually used by women who have problems with UTIs, but research has shown Cranberry Extract can hinder e-coli's ability to bind to the walls of the bladder, and h-pylori in the stomach, so it probably has other benefits in the body to keep bacteria from colonizing as well. I thought it might be helpful.

I've also gotten Noah into sports this year, golf and baseball, strategically chosen for his small frame and lack of muscle. Thankfully, he's enjoying both of them. Like most boys, Noah will never be a professional athlete, but these sports give him a chance to 'be normal', and we don't talk about his immune deficiency and Noah is really enjoying himself. He doesn't run well and his joints are a little messed up (I can't remember the medical word for this, something mobility, lol), but he doesn't run much in baseball and none in golf so it is working out well for Noah.

Right now, I'm just waiting for the location of the lab to do the C2 gene function test...very important next step. Noah's immunologist is going to call Dr. Wong this week to follow up. Hopefully that test will get done soon.



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The Beverly Hills Courier published and editorial I wrote, in response to an editorial published last Friday about someone complaining about all of these handicapped people who don't look handicapped. I guess you could say I had a few words to say about that .

I can't afford to live in BH, and run any credit report on me and you will see that as I have been drowning in medical bills for over ten years, and the reason is simply due to someone's charity, a story I perhaps may tell one day later down the road, as it is painful to tell.
My letter to the editor of the BH Courier
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Noah just had his blood shipped to National Jewish Hospital for Complement disorder testing. They're going to test his C2 and C3 function. The results take 6-8 weeks to get back (I wish I understood what took so long ).

Hopefully this will be the answer, and then one day Noah can be first in line for gene therapy :).
Noah getting his blood drawn at UCLA.
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Things are going well right now. Noah has only had one bad sinus infection and one pink eye infection, and it took awhile to get rid of them but he got through it. I am still looking for a lab that can test Noah's C2 gene function, a doctor is supposed to be looking into it (Dr. Derrick Wong at UCLA) but we know how doctors can be sometimes....it's not that they don't care, it's that when you get to the upper worlds of research medicine, they have kids that are going to die in an hour without help, so a kid with a strange but manageable immune deficiency doesn't get quite the same urgency.

(It's understandable, but frustrating for a mom who wants her son to avoid a rough road ahead.)

I've started Noah on an intense vitamin regiment to help boost his immune system, in addition to his daily antibiotic. Noah now takes Cod Liver Oil, B-Complex, C, Calcium and Magnesium, and a Cranberry Extract pill as well. Cranberry Extract is usually used by women who have problems with UTIs, but research has shown Cranberry Extract can hinder e-coli's ability to bind to the walls of the bladder, and h-pylori in the stomach, so it probably has other benefits in the body to keep bacteria from colonizing as well. I thought it might be helpful.

I've also gotten Noah into sports this year, golf and baseball, strategically chosen for his small frame and lack of muscle. Thankfully, he's enjoying both of them. Like most boys, Noah will never be a professional athlete, but these sports give him a chance to 'be normal', and we don't talk about his immune deficiency and Noah is really enjoying himself. He doesn't run well and his joints are a little messed up (I can't remember the medical word for this, something mobility, lol), but he doesn't run much in baseball and none in golf so it is working out well for Noah.

Right now, I'm just waiting for the location of the lab to do the C2 gene function test...very important next step. Noah's immunologist is going to call Dr. Wong this week to follow up. Hopefully that test will get done soon.
Lucky for Noah, he was the *only* boy in his division so he got a nice 1st place medal after he completed his first 18 holes ever! US Kids Golf was really wonderful and supportive.
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David Noah got his pneumococcal levels checked today at UCLA. He got the vaccine six weeks ago, and then they check his levels to see if he mounted a response.

Normally he mounts a response, even if it isn't a great response, the problem is that he doesn't maintain the antbibody level appropriately, so he has to be vaccinated more often than normal.

This is what signals the immune deficiency--you're supposed to be able to hold on to an antibody level for a certain amount of time.

The problem is we don't understand what's causing it.
David Noah getting his pneumoccal levels checked today at UCLA
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$1,815 of $5,500 goal

Raised by 40 people in 31 months
Created July 24, 2016
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