An Experienced Nutrition Consultant!

Fantastic news!  We have Diana Wright on our team!  Hooray!!!!

If you’re a friend of ours, I’m sure that right now you’re thinking “Hooray!” immediately followed by: “umm…who is that?”

Diana Wright is the amazing nutrition consultant in the UK who worked with a boy with a mysterious blood disorder, similar to but not exactly like Adahlia’s, and helped get him transfusion independent.   I first found out about her back in the fall, when Adahlia still didn’t have a diagnosis beyond “mysterious blood disorder,” and I was on the internet daily, either while pumping milk in the deepest hours of night or while lying next to her, ready to comfort her when she was moaning in her sleep, digging up anything I could find on blood disorders.  Read the article that inspired me to contact Diana and learn how she successfully treated a young boy using leucine and other supplements here.

If you’ve been keeping up with my posts you know that I recently contacted the researchers of the leucine clinical trial starting soon in the US.  Adahlia is too young to participate; researchers don’t know how high doses of leucine would affect an infant at this time.  But the researcher wrote me back, answering all my questions, and included the Czech Republic study on leucine from which they are basing their dosages.  Very helpful people, these scientists.  I love being part of the medical community.

On June 8th, I finally sent an email to Diana.  And then waited.  And then today, I experienced a huge amount of relief when I checked my email, and discovered the following response:

“Bless you. I would love to help you. Can I read this and then can we arrange a skype call for next week?”

Elation!!!

I have no idea what she’ll cost but I don’t care.  She’s the only nutrition expert I know who has successfully treated a child’s blood disorder with nutritional supplements.  If you want to help us out financially, we could still use all the support we can get.  (See our exciting, new fundraising page here… and thank you to everyone who has already helped us out!)

I am just so darn jazzed about this latest development.  Diana will be a fantastic addition to our team.  In the meantime, we are still doing chinese herbs with Adahlia, and no, I have not given up on them.  I will write more about Adahlia’s current health status, as well as mine own, soon.

If you haven’t visited it recently, pictures from Adahlia’s 1st birthday are now posted under “Pictures” on this website.  Joe and I are also kicking around some zany and kid-friendly “funraising” ideas for Adahlia in addition to the “fundraising” … we’ll keep you posted because we’d love for you to come play with us.

If you’re curious, my email to Diana follows below.  Love and blessing to you and yours!

***

Hi Diana,

I am writing to seek your professional assistance with the nutritional care of our daughter, Adahlia, who has been diagnosed with Diamond-Blackfan Anemia.  She just turned one year old on July 3rd.

I read about your success using leucine and other supplements in treating a boy in England who suffered from a mysterious blood disorder.  I wanted to contact you because I do not know any other nutritional expert with your experience.

Adahlia was first taken to the hospital at 6 weeks of age, with a hemoglobin of 1.9.  She has needed a life-sustaining blood transfusion approximately every 4 weeks since then.  The doctors have found a “mutation” in gene RPS 26, which they have identified as a marker for DBA.  She is slightly neutropenic but is capable of mounting a successful response to infection on her own. She is otherwise healthy and developing according to all milestones.  She is a beautiful, bright, active, and inquisitive little girl.

We live in Portland, Oregon.  Her doctors want us to start her on a trial of steroids to see if it increases RBC production.  (She is capable of making normal RBCs, the problem is that she doesn’t seem to make enough, in an appropriate response to the natural, timely death of RBCs. Her erythropoietin levels are high, so that is not the issue.)

Researchers in the US are starting a leucine clinical trial for DBA this year, but Adahlia is too young to participate.  The minimum age to be included in the trial is 2 years, and as I said before, Adahlia just turned 1.  They apparently have concerns about side effects of high doses of leucine for someone under 2.

Personally, I am even more concerned about the side effects of steroids – she is absolutely fine other than the blood issue, and I don’t want to impair her growth or risk the cognitive issues associated with steroids.  I believe the potential side effects from amino acid supplementation are less severe, correct?  I do not wish to start her on steroids and then learn that I could have treated her with leucine.  My intention is to keep putting off the steroids a little longer, as long as it seems to make sense, anyway.

I would like to consult with you about her condition.  I would love to do phone or video conference call and we could possibly fly to England if absolutely necessary.  Or, if you know someone in the US, we could potentially work with them.   We could get nutritional and other tests ordered through her doctors here in Portland, which have been relatively accepting of our attempts at natural healing methods to date.  I am an acupuncturist with a fair amount of nutritional training, and have been working with a trusted professor to administer appropriate chinese herbal therapy.

Please feel free to get in touch via phone or email.  My number is xxx-xxx-xxxx.  Thank you!

All the Best,Erika Marie