Donate to help with Baby Miles’ medical bills

In November 2021 I became an Aunt again to my sweet nephew, Miles Malcolm Reeder. Needless to say he stole our hearts. But he’s had a hard road. His story is below as told by his father…

“In 2021, Tanya’s and my second child was born. Miles Malcolm Reeder. He is the perfect completion to our family. He was born in November in Louisiana. We spent nearly a month in Louisiana due to adoption/legal hoops. We thought we might end up spending Christmas in Louisiana. It was a great time for our family of four to begin bonding- just us. London was the epitome of a perfect older brother. He was glued to Miles. He helped in every possible way that a 4 going on 5 year old could. He needed to be holding Miles’ hand or laying next to him sharing a blanket all. the. time. It honestly was and remains the most precious thing how much London loves his little brother.

For about 8 months, life was perfect. Then September came around and Miles caught a cold. All babies catch a cold so it was fine. Until we started noticing Miles acting differently than we would expect with a cold. We witnessed what we thought were some seizures. We went to the ER where they started running some tests and admitted him to the pediatric ICU (PICU). Long story short, we were there for 2 weeks and every test came back normal while we still continued to observe seizure-like activity. Due to him being adopted and not knowing some of his parental history, genetic testing was requested (it takes several months for results to return). We discharged with a possible neurological diagnosis but nobody felt certain about it. It was just the leading theory. Miles was on the road to recovery. He bounced back from the cold and started acting like himself again and the seizure-like activity went away.

In November, we got a call from genetics that Miles did indeed have a genetic mutation but his specific mutation had never been observed before. It was on a gene that, in some cases, a mutation did nothing. In some cases, it could cause young adult onset Parkinson’s. However, in some rare cases, in very young children, an illness could trigger a disorder called dystonia. Dystonia is a neurological disorder affecting muscle and motor functioning. Dystonia can take many different forms. And how this dystonia manifests in individuals with this genetic mutation? The genetic mutation is so rare, that nobody really knows.

Cue the end of December when Miles caught another cold. He seemed to handle this cold really well. We actually did not see any of the seizure-like activity return and his fever went away. But then we saw Miles start acting differently again. He was sleeping most of the day. He was not active and playing. He just wasn’t Miles. On January 11th, we got up and Miles was not responsive to us at all. He did not alert to his name, his brother’s voice, us, nothing. We took him to the ER again. This trip to the ER felt different than the one in September. At the ER, Miles stopped breathing on his own. He had to be intubated, on a ventilator, and placed in a sedated, medically induced coma.

The time since then has been a blur. Miles is thankfully no longer sedated or on a ventilator. But Miles does remain in the PICU. He is doing better than when we were admitted to the PICU, but his progress remains unstable. We can go a few good days needing minimal support and then have some dystonic episodes that set us back nearly to the beginning. Miles has a team of specialists who are working very hard to treat his dystonia. But we have been unable to predict, prevent, or control the dystonic episodes. Miles has been in the PICU this time for over three weeks. We are not sure when he may discharge. When he does discharge, we know that he will be transferring to an in-patient rehabilitation facility. We are being told to expect around a month at rehab if we were to discharge now.

Miles possesses my heart. So I’m asking you to pray, if that’s something you do. I’m asking for your good energy to be sent his way. I’m asking that you just keep Miles in your thoughts. We aren’t sure what the immediate future holds or the longterm future holds for Miles, but we know we love him dearly.”

My sister and brother-in-law have been incredibly strong throughout this journey and I can’t even fathom how. While Tanya and Sean have kept this struggle pretty private, I’m aware of the daunting toll the growing medical bills, constant traveling back in forth from Shelbyville to Louisville and back again, trying to keep some level of normalcy for London, and having to take significant time off from work is having on their family. And it’s time we help!

If you feel so compelled, please consider donating to help with the cost of Miles’ medical bills and the simple cost of living.

We are a family that believes in the power of prayer and will take as many as we can get. So please please please keep this sweet family on your mind!