DELICATE SKIN, FULL LIFE

Posted July 16, 2018

by Tracy H.

This story is about my son, Graysen. He is 7 yrs old and has classical EDS which he inherited from his father, who inherited it from his father.

Graysen was misdiagnosed at 2 months old by his father’s geneticist as not having EDS. This led us, his parents to make certain medical decisions based on the negative EDS diagnosis that ultimately led to Graysen being dependent on a feeding tube for two months at the age of 2. We went to a new geneticist who confirmed his EDS and ordered a DNA test to confirm.

Graysen’s classical EDS is mild-moderate, but the effects he has felt and will continue to deal with are life-altering. Being a rambunctious boy with ADHD and not being able to play contact sports is hard.

Always being one small stumble away from an ER trip is also hard. But having to be cognizant of your significant limitations at such a young age is the hardest of all.

Graysen takes this all in stride and is a happy, sweet, imaginative, smart, loving boy who doesn’t know a stranger. There are times when he is at war with his body and questions the fairness of it all, but that is a sliver of his life. While he is 100% aware of his “delicate skin”, he doesn’t dwell on his limitations and lives life to its fullest.

I have tried to file his life with activities he can do like swimming, horseback & ATV riding, summer camp, and animals. Animals, especially dogs are his passion. Our dogs have all come from rescues. We also transport and foster rescue dogs which he helps tremendously with. Graysen has learned how to train and work with our dogs and now the fosters. The compassion, love, and understanding he shows the traumatized dogs that come out of bad situations is beautiful to watch. His body may have a collagen deficiency, but what he doesn’t have is a lack of heart because his heart is giant and I am so incredibly proud of this little boy!

I still have guilt for knowingly having a child with someone with an inheritable condition. At the time, it was very difficult to find any information online about the far-reaching affects EDS has on the body and his father knew little besides his personal experience which he had come to accept years prior. I had no idea how awful it was/is. This is now Graysen’s cross to bear. And while I shoulder as much of the load as I can, it is ultimately his and he will carry it with him well after I am gone.

 

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