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Tuberous Sclerosis

So, since we all know how gooey mooey I have become since having Baby Girl, I figured, why not use my new found gooeyness to spread the word about little Atticus and TSC. (AJ is his nickname so I will use that throughout since it's shorter and I have this weird thing about using plurals with words that end in S)

Meet Atticus.



Atticus is just 3 months old and he has just been diagnosed with Tuberous Sclerosis.


I don't really know AJ's parents.  His parents are friends of friends.  I was in the wedding of said friends last October.  AJ's Daddy was also in the wedding and AJ's Mommy attended the wedding.  She was one of the 7 or 8 pregnant ladies at or in the wedding.  Yes, there were a lot of us.  But when I heard about what was happening to this poor little guy, I just couldn't help but feel heartbroken for AJ and his family.  I really felt the need to extend any help I could possibly offer and I'm hoping this blog post will be part of that help.

Anyway, little AJ was born in March and he was perfectly happy and healthy and everyone went home just as they should.  But a few weeks ago little AJ started having seizures, or infantile spasms.  I can't watch the video because it just makes me so sad.  Upon further testing at CHOP, it was determined that AJ has Tuberous Sclerosis (TSC). 

"Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette's syndrome.  The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers." (tsalliance.org)
  
At this point, it's really hard to tell what kind of affect the TSC has had and will have on Atticus.  I am sending nothing but love to this family and hoping for the best.   

I guarantee that costs for testing and treatments are going to sky rocket for this poor little guy so any ideas on fundraising or anything like that would be greatly appreciated.  My list of ideas includes a Facbook page for Atticus (Angels for Atticus or something like that), a Paypal account linked directly to AJ's parents to help with the costs of treatment, possibly even a blog for the little guy.  The options are endless! 

For now, please send this family all of your love and prayers.

Feeling helpless, but not hopeless!

I will post updates regarding any fundraising options we are exploring.  If a Paypal account is created, I will share the link.  If a Facebook Page is created,  I will share the link.  If a fundraising event is taking place, I will share the details.

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