Daxon “Dax” Keener was 8 years old when he attended the 2017 Kidd’s Kids trip with his parents, Heather and Andrew, and his older brother, Aden. Dax has Ehlers-Danlos Syndrome (EDS), and the road to his diagnosis was a long one. It took almost three years of constant pain and illness, 6 hospitals, and over 30 specialists to finally come to his diagnosis. Everyday Dax felt ill and his joints were hypermobile, he felt dizzy, and he was frail and tired. He would also be very cold despite having heated blankets, and he was thin and struggling with mobility and used a wheelchair when he could no longer walk.
When Dax was going through all these symptoms, Heather joined a few local support groups. She happened upon an EDS support group, which descriptions seemed to fit what Dax was experiencing, and they suggested a very knowledgeable geneticist in their area. After some testing, it was determined he has classical Ehlers-Danlos Syndrome. (There are thirteen types of EDS). They were relieved to finally have answers, and they know Dax would battle EDS for the rest of his life. There is no cure for EDS, but the diagnosis allowed Dax to go into a specialist’s office with overall information about how to approach getting some relief for him.
There are two neuropathy medications Dax takes every day to help battle his pain and allow him to walk and raise his arms. Before he started the neuropathy medication, he was in a wheelchair and couldn’t raise his arms simultaneously. Most importantly, Dax has immunoglobulin infusions via pump once a week. Needles are inserted into his abdominal skin and secured, then a pump infuses the specialty medication (derived from blood plasma donors). This treatment provides Dax with antibodies since his immune system is faulty – which is even more important in the time of COVID-19! It’s a difficult medication to obtain and requires blood donations to manufacture. He also has nebulizer treatments for asthma, nasal sprays to help clear the airways, and steroid inhalers to prevent asthma flare ups.
Despite EDS, Dax is just a regular kid who loves horseback riding – he loves equine therapy! He is in band and of course loves video games. When in school he tends to push too hard and overdo himself, so he has to be very careful and take time out to rest if needed. P.E. is one of his favorite classes, but he gets fatigued easily so the coaches have a hard time slowing him down. Swimming is another favorite activity of his because it takes the weight off his joints…and he can do one killer cannonball!
Even though Dax looks like a regular 10-year-old boy on the outside, he doesn’t feel well on the inside. That doesn’t mean he isn’t the same in most ways. He laughs and acts silly, runs and plays when he can, and even gives his big brother a hard time every now and then. He appreciates it when people ask how he is feeling and reach out to let him know they care. Feeling sick everyday can make some days pretty hard.
From Heather’s point of view: “I think the most important lessons I have learned as a parent of a child with EDS are perseverance and understanding. I try to share that. It takes a lot of compassion to truly listen and appropriately respond to someone who looks fine when they say they don’t feel well daily. Generally, if someone says they are sick or hurting, they are. Can you imagine feeling sick or hurting regularly and others insinuating that you do not? That is one of the most difficult elements of EDS for Dax. Understanding becomes key. Also, the perseverance that I have witnessed from my own child is astounding. I say often, ‘If my 10-year-old little boy can suffer every single day of his life, feeling ill every single moment for the past 6 years, not even possessing one memory of feeling well, then we sure can pull up our big adult pantaloons to face the world!’ It sounds silly, but it’s true. There is something to be said in what we are actually capable of amongst our limitations, and Dax has taught me that you can do anything you set your mind to. He has shown me what it is like to go from wheelchair to walker to running, and he did it with a smile. I can’t imagine a bigger lesson than that. The good may not be easy to find, but there is always good to be found!”
Thank you to Dax, Heather, Andrew, and Aden for allowing us to share their story in honor of Ehlers-Danlos Awareness Month!