Dane's Story
December 21, 2004 was a day that changed our hearts and lives forever. Our son, Dane Christian Phelps, was born perfectly healthy, but began to present with a relentless, genetic skin condition at about 6 weeks old. It would take a couple years before it became apparent that Dane’s form of ichthyosis fell into the category of “spontaneous mutation”, as no genetic testing gave us definitive answers. Over the course of his short 3 ½ years of life, he endured more burdens than most people do in a lifetime, yet he was the most joy-filled person we have ever known.
There wasn’t much about life that Dane didn’t love or enjoy despite his constant state of discomfort (and despite the constant stares and comments he had to endure). His love and enthusiasm for life were contagious. His gracious spirit and attitude were inspiring.
Yet, Dane’s typical day was difficult. Having normal, healthy skin, something which most of us take for granted and hardly give a thought to, was a constant battle for Dane. He’d wake up in the morning extremely red, dry and flakey. His feet were thickened with skin and cracked so deeply. I’ll always hear his little voice saying, “Momma, I got cracks,” as he’d shuffle his way to me. As I’d lift off his shirt, particles of skin would just fly everywhere. We all had to be so careful when removing his clothing, as the slightest touch from a fingernail or ring would cut his skin, and make his bath all the more uncomfortable. He’d look forward to his bath, although the first few seconds were always painful, as the water would sting his fragile skin. Regulating the temperature of the bath was also tricky, as he’d easily overheat, or he’d quickly get chilled. After soaking and rubbing off the caked up skin areas (which I have to add he helped me do with his own little wash cloth), I’d lift him out of the tub (all snuggly wrapped in a towel), and hold him in front of the mirror. “Look at that cute little boy in the mirror” I’d say, and he’d giggle, with the most pleased smile you’ve ever seen. It was so important to me that he saw how beautiful he was. We’d then go to his room, where we did the same routine…first rub antibiotic cream over the areas that looked infected, and then I’d cover him from head to toe in Aquaphor, a product much like Vaseline, but a bit thicker and longer lasting. We’d then put his clothes on over that…and he’d be off. “I done Momma?!” When I’d smile and say, “Yes”, he’d always let out a very loud “Yay!” and run off to tell everyone he was ready for the day. I’d reapply the cream a couple times a day, and as he got bigger, he’d run to his room and put it on himself. On days when he was even itchier, we’d give him additional baths, apply additional skincare products, and would give him oral antihistamines and medications. There were times when he even needed more than one bath at night, as he’d wake in the early am hours thrashing terribly due to the intense itching and discomfort. It’s unbelievable to me that he was able to live with this with such a beautiful spirit. I saw so much of God in him, as that was the only way I could understand how he could live with such peace and joyfulness in the midst of such discomfort and pain. As my husband and I would hide tears from him as we held him, we’d always feel his tiny hand gently patting our backs. Imagine the pain, and yet, that sweet soul wanted to comfort others. Truly God’s child.
And then came June 24th, 2008. That was the day that precious little Dane was admitted to the hospital for the last time. We thought he had a flu, but in fact he was going into heart failure. Dane collapsed in the first, early morning hours of June 25, 2008.
As we went to his bedside, and saw the team of doctors still trying to revive him, I prayed that God would save our son, that He would heal him, and that Dane would have the life he so deserved. Although in my heart I hoped so deeply that this would occur in this life, here with us, it just wasn’t to be. In that moment the doctor looked to us and told us that Dane was not going to survive. My husband and I rushed to hold Dane in our arms. Eric cradled Dane as we kissed him over and over again, his precious head, his beautiful face, his tiny arms, hands, legs, and feet. We just kept telling him how proud we were of him, and how very much we loved him. As he began to take his last breaths, the words of the spirit came over me and I said, “Run Dane, run to Jesus, He’s waiting for you” and our sweet, precious Dane took his last breath in this life to enter that beautiful tomorrow. Devastated and heartbroken, yes, but so hopeful because of Who was now embracing him. Eric and I were there the day Dane’s beautiful soul entered this world, and we were there to see him leave it. We remind ourselves everyday that we’re all just passing through, and that our precious little boy now experiences joy and glory everyday.
Everyone who met Dane loved him so deeply, and he loved each one back ten-fold. He had a smile for everyone, and the tightest hug to go along with it! He was extremely funny, always hiding the last puzzle piece from his Grandma, or hiding the dice to the game behind his glasses, while the rest of us searched for their whereabouts. He loved acting silly and dancing with his sister, and he looked forward to playing DS, practicing Karate moves or hitting wiffle balls with his big brother. He added more love and laughter in his short 3 ½ years than some do in a lifetime. When I think about every endearing quality of his, I’m overwhelmed by the desire to help raise funds in order to help find a treatment and cure, so that no other person affected has to be lost to this world. I realize now that all of our trips to every hospital, doctor, or clinic was not for Dane, it was for those who met him…to touch the hearts of everyone he came in contact with, so that, they, too, would never forget, but always continue searching for answers.
Those who are here are so deserving of hope. We pray that our tragedy will lead to another’s miracle. FIRST (Foundation for Ichthyosis and Related Skin Types) is the greatest resource for those suffering from this condition. Already, in five years we’ve been involved with the organization, great strides have been made. Ichthyosis is a little known disease at this point, but with the help of everyone who comes to learn about it, awareness will increase exponentially. We’re committed to this cause. Our goal is to raise awareness and funding, in order to benefit every person and family affected with Ichthyosis. I know that that is still Dane’s hope.
Dane Christian Phelps forever lives in our hearts. We look forward to the day when we are reunited for eternity. Until then, we hope we can continue to share the story of our heroic little boy, who forever changed our hearts and lives, and who opened the eyes of many to an otherwise unknown disease.
God bless all who took time to read about our beloved, precious Dane. To learn more about FIRST, please visit www.firstskinfoundation.org.
There wasn’t much about life that Dane didn’t love or enjoy despite his constant state of discomfort (and despite the constant stares and comments he had to endure). His love and enthusiasm for life were contagious. His gracious spirit and attitude were inspiring.
Yet, Dane’s typical day was difficult. Having normal, healthy skin, something which most of us take for granted and hardly give a thought to, was a constant battle for Dane. He’d wake up in the morning extremely red, dry and flakey. His feet were thickened with skin and cracked so deeply. I’ll always hear his little voice saying, “Momma, I got cracks,” as he’d shuffle his way to me. As I’d lift off his shirt, particles of skin would just fly everywhere. We all had to be so careful when removing his clothing, as the slightest touch from a fingernail or ring would cut his skin, and make his bath all the more uncomfortable. He’d look forward to his bath, although the first few seconds were always painful, as the water would sting his fragile skin. Regulating the temperature of the bath was also tricky, as he’d easily overheat, or he’d quickly get chilled. After soaking and rubbing off the caked up skin areas (which I have to add he helped me do with his own little wash cloth), I’d lift him out of the tub (all snuggly wrapped in a towel), and hold him in front of the mirror. “Look at that cute little boy in the mirror” I’d say, and he’d giggle, with the most pleased smile you’ve ever seen. It was so important to me that he saw how beautiful he was. We’d then go to his room, where we did the same routine…first rub antibiotic cream over the areas that looked infected, and then I’d cover him from head to toe in Aquaphor, a product much like Vaseline, but a bit thicker and longer lasting. We’d then put his clothes on over that…and he’d be off. “I done Momma?!” When I’d smile and say, “Yes”, he’d always let out a very loud “Yay!” and run off to tell everyone he was ready for the day. I’d reapply the cream a couple times a day, and as he got bigger, he’d run to his room and put it on himself. On days when he was even itchier, we’d give him additional baths, apply additional skincare products, and would give him oral antihistamines and medications. There were times when he even needed more than one bath at night, as he’d wake in the early am hours thrashing terribly due to the intense itching and discomfort. It’s unbelievable to me that he was able to live with this with such a beautiful spirit. I saw so much of God in him, as that was the only way I could understand how he could live with such peace and joyfulness in the midst of such discomfort and pain. As my husband and I would hide tears from him as we held him, we’d always feel his tiny hand gently patting our backs. Imagine the pain, and yet, that sweet soul wanted to comfort others. Truly God’s child.
And then came June 24th, 2008. That was the day that precious little Dane was admitted to the hospital for the last time. We thought he had a flu, but in fact he was going into heart failure. Dane collapsed in the first, early morning hours of June 25, 2008.
As we went to his bedside, and saw the team of doctors still trying to revive him, I prayed that God would save our son, that He would heal him, and that Dane would have the life he so deserved. Although in my heart I hoped so deeply that this would occur in this life, here with us, it just wasn’t to be. In that moment the doctor looked to us and told us that Dane was not going to survive. My husband and I rushed to hold Dane in our arms. Eric cradled Dane as we kissed him over and over again, his precious head, his beautiful face, his tiny arms, hands, legs, and feet. We just kept telling him how proud we were of him, and how very much we loved him. As he began to take his last breaths, the words of the spirit came over me and I said, “Run Dane, run to Jesus, He’s waiting for you” and our sweet, precious Dane took his last breath in this life to enter that beautiful tomorrow. Devastated and heartbroken, yes, but so hopeful because of Who was now embracing him. Eric and I were there the day Dane’s beautiful soul entered this world, and we were there to see him leave it. We remind ourselves everyday that we’re all just passing through, and that our precious little boy now experiences joy and glory everyday.
Everyone who met Dane loved him so deeply, and he loved each one back ten-fold. He had a smile for everyone, and the tightest hug to go along with it! He was extremely funny, always hiding the last puzzle piece from his Grandma, or hiding the dice to the game behind his glasses, while the rest of us searched for their whereabouts. He loved acting silly and dancing with his sister, and he looked forward to playing DS, practicing Karate moves or hitting wiffle balls with his big brother. He added more love and laughter in his short 3 ½ years than some do in a lifetime. When I think about every endearing quality of his, I’m overwhelmed by the desire to help raise funds in order to help find a treatment and cure, so that no other person affected has to be lost to this world. I realize now that all of our trips to every hospital, doctor, or clinic was not for Dane, it was for those who met him…to touch the hearts of everyone he came in contact with, so that, they, too, would never forget, but always continue searching for answers.
Those who are here are so deserving of hope. We pray that our tragedy will lead to another’s miracle. FIRST (Foundation for Ichthyosis and Related Skin Types) is the greatest resource for those suffering from this condition. Already, in five years we’ve been involved with the organization, great strides have been made. Ichthyosis is a little known disease at this point, but with the help of everyone who comes to learn about it, awareness will increase exponentially. We’re committed to this cause. Our goal is to raise awareness and funding, in order to benefit every person and family affected with Ichthyosis. I know that that is still Dane’s hope.
Dane Christian Phelps forever lives in our hearts. We look forward to the day when we are reunited for eternity. Until then, we hope we can continue to share the story of our heroic little boy, who forever changed our hearts and lives, and who opened the eyes of many to an otherwise unknown disease.
God bless all who took time to read about our beloved, precious Dane. To learn more about FIRST, please visit www.firstskinfoundation.org.
