Amy's Journey to NIH
Thank you for your love, kindness, compassion during these last few months. I have been so blessed to have experienced such love.
Today I want to update you from today and catch you up from February.
As many of you know, I have a rare disease
Disease call "Jobs Syndrome" named after the biblical character. The variance that I have is even rarer. I have been patiently waiting (not my best attribute☺️) for acceptance into a program at the NIH
(National Institute of Heath, in Bethesda)
I received the long (it felt like years !!)
awaited call recently that I was a candidate and would begin my journey on July 18th. I will begin the process of Genetic testing, scans of all body parts, meeting with Teams of Research Doctors and more. I will return to Boston as they decide the course of action needed to treat and understand this Illness. They now know that what I've endures is evident upon birth. My hope is that there will be immediate hope and medical treatment for children with this disease.
I will keep you all updated as I am able to do so. It is a delight to thank you all for you amazingness!!
Blessings to all of you.
You have been mine😇
(This is the original update lovingly written by Emma. Hopefully this will bring you up to date if you are just joining us🙏🏻
On Mon, Feb 8, 2016 at 8:29 PM, Emma Frangules wrote:
Hope this email finds you all well. Aunt Amy and I compiled a list of close family and friends, in hopes that this email thread can help provide the group with important updates related to her health and progress.
As some of you may know, Amy checked into the Beth Israel Hospital on Wednesday night due to a severely compromised immune system and active case of MRSA. Over the course of the weekend, the BI team and infectious disease specialists worked to triage Amy's care, perform the necessary analysis, attempt to alleviate her pain, and outline the best course of treatment.
Unfortunately, her overall health and status remains the same. Thus far, the intravenous antibiotics have not proven successful against fighting the infection nor improved Amy's condition. As of this evening, the physicians have decided on a new course of treatment and will be prescribing Amy with a stronger, yet rarer, oral antibiotic.
We are hopeful that this new and more aggressive treatment will be effective at combating the MRSA infection. Amy will need to continue to stay at Beth Israel Hospital until there is noticeable improvement. The ultimate goal is to fight back the infection so that Amy can travel to the National Institute of Health in order to overcome her other pre-existing condition--Job's syndrome.
- Link to learn more about Job's Syndrome from the National Institue of Health: http://ghr.nlm.nih.gov/condition/autosomal-dominant-hyper-ige-syndrome
Please let me know if anyone has questions or if there is anyone else who would benefit from receiving these updates. I know Amy greatly appreciates all the prayers, calls, love, and support from this group thus far.
Thank you all again for everything and your continued support--what a special and loving group!
Emma, Amy, and Harry