When two people are connected, there is a tie - a common thread they both share. For some, it may be church, and for others, it may be a movie or music. For Michael Wasserman and me, it was his artwork and The International Down Syndrome Coalition - in the beginning, at least. Now the tie that binds us is I Run 4. Together, with the help of God, he and I have changed some lives.
Before IR4, Michael and I were complete strangers, and in a way, we still are because we have never met face to face or skyped. But he is still my best buddy! Now if Michael hadn't been blessed with Down syndrome or cursed with bilateral hip dysplasia, we may have never crossed virtual paths. So I guess it's safe to say that those two diagnoses are also a tie that binds us together.
For Yanni, the tie is completely different. Her tie with runner Devon Allwine is something I had never heard of before - schizencephaly. So I had to do some wiki-research! (yes, I linked the word to save you some research time). Yanni's mom Lisa Wilson says "her limitations with mobility and whatnot are fairly standard for her condition. But I don't want to focus much on that because she is a beautiful little girl with a smile that lights my world and the world of so many other people."
Logan's tie with runner Renee Baio is called Fragile X syndrome - and Renee's tie with I Run 4 is the nonprofit organization founded by her and husband Scott. Some of the children in The Bailey Baio Angel Foundation are matched in IR4. The BBAF provides "certain assistance and emotional support to children and families affected by Organic Acidemias and other diseases detected through Newborn Screening." They started the nonprofit after a terrible scare...
"Within days of her birth, Bailey tested 'positive' for a metabolic disorder known as “G-A 1”. For the first ten weeks of her life, we lived a nightmare founded in overwhelming love that we felt for this gorgeous little Angel who had graced our life, combined with a level of fear, grief, and pain that we had never before experienced in our lives.'As it turned out, our prayer for a miracle was answered as Bailey’s final round of tests came back showing that the first tests had been ‘false positives’"
The Baio's then set out to help those whose tests weren't as fortunate.
What are some of the other ties in IR4? Let me give you a little list...
cerebral palsyspina bifida
autism
nonketotic hyperglycinemia
mitochondrial disease
leukemia
leukodystophy
sensory integration disorder
epilepsy
deletion 22q13
trisomy 9
CDKL5
muscular dystrophy
multiple sclerosis
spinal muscular atrophy (SMA)
alternating hemiplegia of childhood (AHC)
(This is quite a list and I apologize for the ones I missed.)
Now I know this wasn't my typical up close and personal blog but I want people to know that these are the ties that bind us together in this incredible melting pot called I Run 4. We are truly blessed to have wonderful people like them in IR4. This is where bonds are formed and EVERYONE is beautiful! Everyone's life here is equally important and we want everyone's voice to be equally heard. Our buddies are the words and we are their sound.
Be the Sound and ask "Who do YOU run for?"
