Newsday article

http://www.newsday.com/long-island/towns/long-island-now-1.1732330/mastic-beach-unites-for-7-year-old-with-blood-ailment-1.5848407

There are a few inaccuracies…

First, Nora is 8.

Bone Marrow Transplants are not “surgery” she goes through a week of chemo and a day of radiation and then gets a
transfusion of bone marrow, not blood, which goes directly into her heart it takes an hour or so. The “Stem Cell Push/Boost” is a week of chemo then a syringe of Stem Cells are pushed into her heart it takes 5 minutes. Stem Cells went hrough her mediport, The Marrow went through a catheter in her chest.

The Nora Fund is a Charity to help with Nora’s expenses. It is not tax exempt. It raised $45,000 in 3 three years with $28,000 of the money earned, going toward bone marrow swabs. The rest is being used for gas, tolls, parking in Manhattan, and organic groceries. When she is well the remainder will go towards the “Frances Pope Memorial Foundation” who helped Nora and her family through-out her whole ordeal. They are angels! If you are looking for a truly wonderful charity to give to that IS tax-exempt. They are the best.

Nora is at the Ronald McDonald House in NYC not New Hyde Park. She goes to Memorial Sloan Kettering not LIJ Cohen.

Advertisements

2 thoughts on “Newsday article

  1. Nora is a tough girl to be going through what she is having to endure. My wife was diagnosed with AA in 2009. I would like to tell you about how we are getting it fixed if you are open to Complimentary medicine (I would call it Alternative) but that would not be right. It won’t interfere with what she’s doing because it helps to replace the fundamental building blocks the body needs to repair the things that cause AA. Please contact me if you would like more info, e-mail is below.
    God bless Nora and your family,
    Travis Julius

    • That sounds good! Please let us know what those Complimentary Medicines are. Please keep in mind she cannot do acupuncture because she cannot stop bleeding or acupressure because of the bruising. She does do yoga & karate twice weekly, takes vitamins (Leucovorin and Daily Gummy), eats a low-microbial, low-sugar, low-salt diet, does mindful meditation, breathing exercises and prays every night as well as attends Mass weekly. If there is anything else she could be doing please let us know and I will run it by her transplant team.

      She surprisingly has lots of energy for her low level hemoglobin and except for the mask, gloves and bruises, you would never know she is sick… it is only in private that she reveals her anxieties. Like most of us.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s