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Caleb's Story Update
I am incredibly grateful to Darryl MacDonald and “team” for initiating a fundraiser for Caleb. We have been humbled through our experience in caring for Caleb and are at the point where we simply can’t do it without help. Caleb is now no longer attending school and is at home all day. The disease has progressed to the point where he can no longer move his torso. He has severe scoliosis and he can no longer roll or turn at night. He calls us to come help him whenever he is uncomfortable, and of course we get up and go to him. However, the months of disrupted sleep have taken a significant toll. We need to find and hire a caregiver to help us.
For those of you that are unfamiliar with Caleb, here is a little of his story…
We were blessed to become Caleb’s adoptive parents and bring him home three days after he was born in 2008. Life was good and we were full of joy. We did notice Caleb was missing some benchmarks during his first couple years so we did have some tests done. Caleb was diagnosed with autism just before he turned two. Things were going well as we adjusted to this new normal, however, over the next two years, we noticed a number of physical challenges he was having. To make a long story short, after a series of tests in 2013, Caleb was diagnosed with Duchenne Muscular Dystrophy (DMD). Click this link for more on DMD. https://youtu.be/KA8W5UfE4ts?si=GsuiRalsl64f3sNf
Caleb became nonambulatory at age 11, and now at 16, he is unable to sit up without support and is only able to move his head, hands, and feet. This means that someone must dress and undress him, feed him, bathe him, and brush his teeth. He needs to be lifted on and off couches, chairs, beds, and the toilet. At night, he can no longer roll over on his own, so when he needs to change positions, someone must help him. If he has an itch or needs to wipe his eyes, someone has to either do it for him or lift his arm and hold it for him.
Caleb’s autism makes caregiving that much more challenging. In fact, school has become too stressful for him because of his sensory issues. He no longer attends the school that is right across the street from him and now requires someone by his side all day, every day.
Caleb is a joy and an angel. That said, as any caregiver will tell you, it is stressful, emotional, and exhausting. Over these past few years, it has taken a heavy toll on us. His mom and I have both been to the ER from stress related issues, and as hard as it is to admit, we can’t do it any more without help.
Caleb turned 16 in October. Perhaps the hardest thing is knowing that he may only have a few more years to live. It’s not really possible to explain the affect this can have on a parent’s life.
Needless to say, because of this, I want to spend as much time with him as possible… and give him everything he needs and deserve…now….
For those of you who know me best, you can understand how hard it is to accept help from others. I’ve always believed that, not only should I be capable of handling my own challenges, but be the one helping others. Now, through the gift of my special son Caleb, God has broken me. I no longer have a choice but to admit that Caleb needs help beyond that which I can provide.
I am incredibly grateful to my Army Hockey teammate, Darryl, and the rest of the team for initiating this opportunity to make Caleb’s life as full as possible. It is my hope and prayer that through the generosity of others, “Caleb’s Special Needs Trust”, might not only help Caleb and our family, but other families as well.
Blessings on you and yours,
Always,
Marc Kapsalis
Contacts
Darryl MacDonald
Marc Kapsalis
