Aislynn is 15 months old. We call her our little ray of sunshine because her middle name is Rae. She is so “rotten.” We call her rotten because she was always getting in to everything before she got sick. She would get into the silverware in our dishwasher. She would unfold clothes that I was folding on her floor. She was just being a cute, rotten baby and we really missed that side of her in the hospital. Rae loves music. She will dance to any beat and loves playing with her older sister. Our girls are so close with one another. They are two years apart. We love camping and swimming. We just hope that our Aislynn will be able to continue to do the things she loves with this diagnosis.
The diagnosis of TANGO2 for Aislynn came two weeks after she was admitted to Cincinnati Children’s hospital. Up until this point, she has developed normally. She met all milestones besides not walking yet. But our pediatrician wasn’t concerned with how she was growing. I was actually in the hospital with my other daughter Adelaide who was being treated for Kawasaki disease when my husband calls me and tells me that Aislynn won’t wake up from her nap. After rushing her to the emergency room and being transferred to the children’s hospital, and so many tests, our genome sequencing results revealed her diagnosis of TANGO2. With her being unresponsive and her blood sugar dropping so low, she has a lot of brain damage. We’re not sure what her recovery will look like yet. We are still in the ICU.
***Continue below for an update from the Wiley Family***
It has now officially been one year from Aislynn’s metabolic crisis. She has made so much progress this past year. Our family has now settled in to our new normal of raising a child with special needs. Aislynn is starting to take tastes of food by mouth, she is working on head and trunk control in therapy. She has went from constantly needing a neck brace on to not needing one at all. Our life looks a little different now but we are still able to enjoy life doing the things we love like camping, swimming and fishing! We have more hope now then ever that Aislynn is able to live a long life and make more progress thanks to all the support of the TANGO2 Research Foundation and their drive to fund research!
TANGO2 Research Foundation-funded projects are searching for ways to end the diagnostic odyssey for families to stop metabolic crises before they can happen. We are rallying our community to ensure funding for meritorious research projects in our next research grant cycle. Please consider making a donation or monthly donation today!
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