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This adorable little boy Alexander -- -- struggled with an immune deficiency disease and lost his battle when he was just fourteen months old.
Not long after his family forms did eat great foundation to push for -- is an immune deficiency were searched.
Joining us now to tell us more about the cause is Alexander's month and that co founders of the great foundation Allison and keep -- -- thank you both for coming in today expanding and you have your daughter just off camera here civil failing is there.
Alexander and watch it -- looking at the pictures and we talked about this just had such a spark such a light in hand tell us a little bit about your family's journey.
Well Alexander was diagnosed with immune deficiency early in his life and aunts we learn more about it we knew that a bone marrow transplant was his only chance of having -- healthy life I -- something that would take him past the age of one or even two years old.
And he did.
Have a successful transplant but unfortunately there were other complications or respiratory complications when you have a bone marrow transplant they take your immune system down to give you the new one -- as it's ramping up he contracted pneumonia -- was only fifteen pounds and when you have pneumonia.
It's it's too much sometimes for the body to handle.
And you are taking tragedy now and trying to turn it too good for other families and other people tell us about what -- great is about.
Be great our goal is to help improve the lives of medical outcomes of children with immune deficiency and we reflect and -- journey and what could we do what did we learn as a family.
At the time I his sister was five years old when her brother passed away.
And so we've started four programs the first is with Children's National Medical Center.
Where -- pursuing a five million dollar chase to build based center for diagnostic immunology and transplantation.
Children's is a fantastic institution but we want to expand their diagnostic capability and be able to help more families with answers that can come quicker.
Working with the hospital I started a parent orientation.
Any family moving -- the transplant regardless of immunology pediatric cancer when you have a bone marrow transplant here in isolation for three weeks at a minimum.
How does it can still be a kid how does -- -- still maintain everything that they need to at home.
So and share things that we learned we experienced as well as what I've learned from some other families -- -- more programs -- third one being our partnership with being the match foundation.
Where be great foundation is collecting funds to provide cord blood donation counts when a newborn.
Arrived she can take the cord blood put it in the public bank and you have that chance of saving -- life.
Through cord blood donation.
And cord blood transplants can happen anywhere from newborn to someone in their seventies and then our final piece is the fast tracking diagnosis.
Infants are screened across the country went airborne and one of the things -- being added to the panel -- -- severe combined immune deficiency.
And you get a heads up that there may be something in the future before any symptoms show up.
-- so we're working the pediatricians families and the different states to help and increase awareness.
But also get that test on the panel under 25% of I think there's only eleven or twelve states right now that are.
Doing man doing the screening and has to increase and that we can help think markets.
Are -- we are gonna direct people to be great foundation dot org web sites and they can learn more and if you're in the DC area there's in part of that coming up that will make sure the folks know about on May eighteenth to help.
A raised by the defense -- -- time -- -- did such an excellent job.
But but we know that this is a family affair and and till as a Greek orthodox and I honestly happy Easter to all of you thank you for spending part of that with us appreciate it thank you -- actually end them.
Best wishes with the work that you're doing much.
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