Wednesday, October 29, 2008

Fanconi Anemia - Sharing Our Thoughts

In light of Elias' recent diagnosis, we would like to take a few moments to finally speak openly about this matter. We want to make sure everyone understands what this all means, and most of all answer the most common question we have been asked..."What can I do to help?"

Fanconi anemia is a rare genetic disease that causes many health challenges, including birth defects, bone marrow failure, leukemia and other cancers. The life expectancy of a child born with Fanconi anemia is 22 years. While that is frightening, there are tremendous advances in medical science and FA everyday. Fund Raising and creating awareness are going to be great activities for us and any of our friends and family that would like to offer help.

We received a packet in the mail from the Fanconi Anemia Research Fund. After sorting through, reading, and absorbing all the wonderful material, we feel as though we have a mild sense of direction. We at least understand more than we did. We have also received e-mails from medical professionals that have come across Elias' blog, offering help and contact information. We also want to share some ways that everyone can help not only us, but others as well. One of the most interesting things we have learned about FA is that the research to find a cure for this may in fact pioneer other cancer and related cures or solutions. It is amazing to hear that families afflicted with FA raise over 85% of the funding's money. We are looking forward to working and contributing as well to help find a cure. It is amazing how such a small group of people are able to work to keep research going. We already are brainstorming with benefit ideas. I'm hoping that my contacts as a musician might open up an opportunity to provide something magical and worthy to raise money and awareness of this hateful affliction. This disorder is very serious and has claimed too many lives.

Fanconi Anemia does not occur very often and the experience can be devastating. We have run the gamut of emotions from guilt, shock, frustration,and helplessness, to mention a few. We certainly held on to hope that the VACTERL diagnosis would stay, and actually let our guard down a bit. This was primarily due to everything else that was going on, it sort of slipped by us mentally. Since learning the diagnosis almost 3 weeks ago, things have been insanely busy and intense. So much so that we barely had time to digest and absorb the information. The last few days we have had the opportunity to talk about things and let the reality of this dreadful illness sink in. Our overwhelming feeling for the moment is to continue as we have with Elias. Attempting to keep things as normal as you can conceivably achieve with him. Continuing to take things one day at a time and as they come is how we will maintain focus. We want to enjoy the moments we have and not look too far into the future and anticipate the potentially dreadful moments ahead. Just as Elias has been doing all this time, we want to continue to fight back. It is an attitude that keeps us from becoming a victim. Have we shed tears about this? Yes, and we will continue to do so, but we will not allow ourselves to become obsessed with fearing tomorrow. We live for today, and Elias has always provided us with "great big beautiful tomorrows."

We will need everyone's support throughout this process. Accepting the knowledge that Elias has a potentially life threatening illness is no easy challenge. Everyone will cope with this differently, but one challenge we must confront is not becoming isolated. We have decided to continue with sharing and discussing our feelings freely. We feel that you can better support and understand our needs during the difficult periods. It is important that you feel comfortable asking us questions about what you do not understand throughout the process. We will not be offended, you can not say the wrong thing. Believe it or not, it is very therapeutic to openly disclose information. So please do not hesitate to ask anything, we will welcome your request for knowledge. 

So far the most common questions are the logical ones, "How are you managing?" and "What can I do to help?" As for managing, it is difficult to say for certain, but there is a underlying strength we are feeling. Faith is also keeping us in check. Although we have always subscribed to the "God does not give you more than you can handle" philosophy, we have often wondered how much more he feels like we can manage. While that is not for us to always understand, we will be thankful with what we have. This has been the most difficult challenge we have been confronted with. Our love keeps us from falling apart, but you all will be that foundation for the rock that is our family. To address the second question, what can we do to help? Honestly, right off the bat there is not many specifics. Down the road we are certain there will be many needs, both great and small. For now there are simple things that individuals that want to help can do. One great way to help is become a marrow donor. The process is very simple and something most people never really think of doing. Also If you are expecting a baby or know someone who is, consider donating the cord blood if you are not banking it for yourself. There is information about this on You might even type as a match for Elias and even if not, you could be helping someone else possible survive a very deadly disease. You can also register at and choose Fanconi Anemia Research Fund as your cause. This site partners with over 700 online retailers, but you must shop through this site to get the donation to go through. This is great for all you online shoppers out there. Also, once you register even if you do not shop through there you can also visit With the cause selected from it will donate a penny for every search done through this site. It is powered by yahoo so it is a good search engine. It may not sound like much, but if everyone who reads this blog did this, even if it was just for a month think of the money we could raise for research! We have already started using both of these sites and find them easy to use. These are a few things that individuals can do for us at the moment. We will also have these links on the site for future use.

Finally, we would like to ask our family, but also anyone that is really interested in helping, to read Fanconi Anemia: A Handbook for Families and Their Physicians.  Adobe Reader is required (Download a free copy of Adobe Reader). Chapters 1, 4 and Appendix B are short key segments to read, if nothing else, but the entire handbook provides very basic information written by parents of FA patients and not medical professionals. This will be a tremendous asset for information as we journey with this illness. Again, do not hesitate to ask us anything. The more we all know the better prepared we will be to handle whatever becomes of the illness' course. There are so many who have gathered here to support Elias. Bless you all for the love and support you give us daily. With your help we have the courage to navigate through the darkest of roads and be shown the way towards the light. There are certain to be some frightening times, but more importantly many many wonderful memories created. Together we will fight and find a way to prevail through all of this. A life is not celebrated by the number of breaths we take, but how many breaths we take away. Elias has the spirit and personality to take our breath away with his amazing strength and carefree attitude. Thank you all again for staying behind us during a time when it might be easier to turn and look away. Each and everyone of you are a gift to the three of us. We are extremely grateful and love you all. May God bless us all and grant us his will and the courage to face and accept that which he has chosen for us.

"Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles."
- Samuel Smiles-


  1. Question - does it help when people say you two are amazing? Your courage is amazing. Your articulation of your emotions is amazing. I'm just sitting here stunned, not sure what to write. Wow. That post was sort of like your own Declaration of Independence.

  2. You rock! :)

    I registered to be a marrow donor when my son was tested for FA and it's surprisingly easy. AND these days marrow donation is usually done much like a blood donation...not the OR needle into the bone that you picture. Sweet!

    And I'll be donating cord blood for sure. Also easy!


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