2024 International Batten Disease Awareness 5K MVP Recognition

Last year I started a sort of “MVP” recognition at the annual International Batten Disease Awareness 5k in an effort to shout out and brag about a special player in Daxx’s life. I get so emotional at these 5k’s, crying every year, and I’m not even a crier! I knew I’d never be able to get through this in person, so I had to write about it.

A brief update on what has changed since last year's 5k. Daxx is regressing. This year was a tough year for him with a lot of disease progression. He sometimes struggles to recall basic facts and skills he once knew. He requires more and more accommodations and modifications. His body is weaker than it was. He recently couldn't do one situp in Physical Therapy. His mood can be quite volatile these days. He snaps, he yells, he cries, he hits. At times, you can't even speak to him without him grunting in frustration. He looks physically ill. We had a doctor's appointment with a doctor who sees him every 6 months and she teared up at this appointment. She can see how much it's changed him. He has tics, he talks to himself, and he has anxiety. He gets wound up to tears about events or outings outside of his routine. This presents as an involuntary, excessive eye rubbing. He cries "People are going to see my face! My face isn't normal! My eyes aren't normal! I just want to be normal!" Heartbreaking. Sleep is a major struggle. He falls asleep very late, even with medications, and wakes throughout the night and very early for the day...like 1-4 am. Most recently, he has begun having what I call a "dementia crisis" at night. He gets up to go to the bathroom , insisting he has to pee, every 30 seconds. Up down, up down. As soon as he lays down, he gets back up to go. He yells and cries about this, kicking and hitting if you come near. Last night, he crawled into his little brother's bed in the middle of the night. When I asked him why, he snapped "I'm not!" I whispered "You're in Vaughan's bed now." He yelled "I'M NOT!" The nature of this disease is that he is slowly losing his mind and losing his life, though Daxx tends to progress in dramatic "chunks". This year has been full of dramatic chunks.

On to the good news. You have to know the bad to understand just how important this year's recipient is. The 2024 MVP award goes to Kate Hopson, Daxx’s TVI, or Teacher of The Blind and Visually Impaired. Let me tell you a little bit about why Kate wins this year’s award, though this doesn't cover all of her amazing qualities or what she's done.

Love is patient. Love is kind.

Kate is so patient and kind, while also knowing exactly when and how to be firm. Daxx has aggression caused by dementia, so knowing how to handle his mood swings is a fine balancing act that she nails better than even I can do as his mother. Daxx is his best self with and for Kate.

It does not boast, it is not proud.

Many coworkers don’t even know who Kate is. She lays low and works hard for her students. She never advertises the lengths she goes to for these kids, this job, this calling. She spends most nights brailling their assignments into the very late hours. She has spent more hours than I probably even know working on hundreds and hundreds of pages of documentation to provide evidence to help Daxx get the accommodations he needs for school. This disease is unknown to all involved in his academic life, so there is no peer or administrator directing Kate on how to help him, what steps to take next, or what loopholes and workarounds can be used to make his quality of life better. She’s the kind of caregiver who takes matters into her own hands. She simply asks for my blessing and does the dirty work. Months of evaluations. Hundreds and hundreds of pages. Late nights, lots of tears, and sacrificing time with her own family while sharing little with me so as to not place any burden on me.

It is not self-seeking, it is not easily angered, it keeps no record of wrongs.

It always protects, always trusts, always hopes, always perseveres.

Kate has not always been a TVI. She became a TVI right when the military sent us to Florida because of Daxx’s diagnosis. She was brand new to the career and said “No braille students.” She quickly changed her mind and took Daxx on. She’s known Daxx since diagnosis, before he showed signs of the disease other than vision loss…before he began to change. I have seen articles written by parents of special needs kids explaining how the compassion others have fades over time, when it’s no longer new and the kids are no longer little and cute. I have experienced this myself. People who tell me they love me, love him, or love our family don’t show up, don’t support the efforts to raise money and awareness, and don’t share the posts about his disease or events like this 5k. One article called it “compassion fatigue.”  Not Kate. She KNOWS him, what he’s going through every day and every night…things I don’t tell anyone else. She loved him then and she loves him now, even more fiercely. She has told me this is her calling. She has told me she’s in this for life.

For Valentine’s day, her husband bought her a necklace with two charms: the letters DD for Daxx Deserves. He said “This way, you can always have him close to your heart.” On a day that celebrates their marriage and love, her husband thought to buy her something so sentimental about MY boy. This shows you her level of investment.

When I want to throw in the advocacy towel because I can’t bear it anymore, she offers, every single time, to take it on herself. She’s a ride or die. She’s a lifer.

Love never fails.

Kate has never failed us, rather she constantly exceeds expectations. She’s the greatest blessing, a constant rock, a fierce advocate, and an incredible teacher. During the most difficult year yet with this horrific disease, Kate has been the MVP and then some. I am fortunate to say that she has also become my best friend, a term I haven’t used since my best friend Jen passed away almost 10 years ago. Kate’s the real deal. Kate's the G.O.A.T.