Surgeries/Medical Equipment
Donation protected
*UPDATE WE ARE NOT ATTENDING THE ICHTHYOSIS CONFERENCE, JAMISON IS NOT STRONG ENOUGH TO TRAVEL. WE ARE STILL ACCEPTING DONATIONS-HE WILL HAVE AT THE VERY LEAST- TWO SURGERIES. WE NO LONGER QUALIFY FOR STATE HEALTH INSURANCE. *
Our Trying Experience: I became infertile in 2013 because of endometrosis. I had surgery to remove the excess scar tissue in August 2016. (My left ovary and tube was removed as well.) We began trying again as soon as we got the ok from our doctor. On October 14th I had a positive pregnancy test! I still remember crying histarcially jumping up and down. I was expecting twins. At 11 weeks along Twin B absorbed itself. As the months went on I was becoming depressed. I spent 80% of my pregnancy in ER rooms, Urgent Care Clinics, Dr. Visits, weekly ultrasounds, and Hospitializations. I had surgery during my pregnancy, mid and pic lines, over 150 IV’s, and was told 7 months into my already high risk traumatic pregnancy that he would not make it. My twin sister set up a Go-Fund me page for our precious Jamison- we began the process of planning a funeral at this time. It was a very traumatizing for all of us, and we still continue therapy.
Jamison was born with a life long, severe rare genetic disorder called Harlequin Ichthyosis. Because Ichthyosis is a life-long condition, and because there is no cure, the goal of treatment is to alleviate symptoms and relieve pain/discomfort.
Despite what the Dr. Said, (he would be stillborn) I delivered Jamison. He came out crying and I knew he was going to fight. While in recovery, I kept asking to see him. He was alive! Minutes felt like hours, my nurse assured me soon. Soon did not happen until two days later because I was rushed back into surgery, having 4 1/2 blood transfusions, and then in the ICU. All I could do was look at pictures of him, I so badly wanted to take away his suffering. To tell him God’s angels are surrounding you! When I was more stable nursing staff helped me into a wheel chair, I was finally going to meet my miracle baby!
I broke down when I saw him- tears of joy, fear, hope, grief, that moment will always be in my heart. He was so tiny -4lbs 2 oz born 6 weeks early. My heart broke into a million pieces over and over. I wanted to hold him and tell him it’s going to be ok. Those were really hard days, weeks, months. It was so isolating, exhausting, & scary. Not knowing God’s plan but learning to trust in it, was hard.
Everyday he was getting stronger than the last, and proving doctor’s wrong. Jamison is the strongest, bravest, little boy I have ever met. He overcame many challenges, and continues to do so. God had his angels surrounding him from day one. Here we are almost a year later and my boy is still stumping specialists left & right. It is so rewarding watching him overcome many challenges, and planning his first birthday! He still requires around the clock care- that includes skin care-every 2 hours he has aquaphor applied head to toe and his entire body is examined for any sign of a skin infection, every 2 hours his temp is checked (due to overheating), 2 -1 1/2 hour baths daily, 2 -hour long bleach baths weekly, eye care, respitarory care 5x/day, physical therapy 3 hours/day, occupational therapy, speech therapy, the list goes on. And I am given my endurance everyday by God. We live a very busy lifestyle. Jamison’s needs require we keep a tight schedule and manage our time well, which leaves us with little wiggle room to just breath. I have strong faith every day to keep on pushing asking God to carry us all. We are a low income family, doing the best we can with what we have everyday.
The disorder is so rare Jamison is 1 out of 100 approximetly in the U.S. living with Harlequin Ichthyosis. Which leads me to the reason behind this page, every year there is a national conference for those affected with Ichthyosis. A time for creating life-long relationships, support, education, and hope. This year the conference is in Nashville. We cannot afford the total cost to go, it would be a life changing event for Jamison, myself, and Kolton to attend. I hope to have this expierence to gain more insight on how to care for Jamison and meet his needs better, build new relationships with families who understand, and bring back what is learned to his specalists/providers so we can give Jamison the best life he deserves in working together for him. Please, help us get to Nashville. <3
Our Trying Experience: I became infertile in 2013 because of endometrosis. I had surgery to remove the excess scar tissue in August 2016. (My left ovary and tube was removed as well.) We began trying again as soon as we got the ok from our doctor. On October 14th I had a positive pregnancy test! I still remember crying histarcially jumping up and down. I was expecting twins. At 11 weeks along Twin B absorbed itself. As the months went on I was becoming depressed. I spent 80% of my pregnancy in ER rooms, Urgent Care Clinics, Dr. Visits, weekly ultrasounds, and Hospitializations. I had surgery during my pregnancy, mid and pic lines, over 150 IV’s, and was told 7 months into my already high risk traumatic pregnancy that he would not make it. My twin sister set up a Go-Fund me page for our precious Jamison- we began the process of planning a funeral at this time. It was a very traumatizing for all of us, and we still continue therapy.
Jamison was born with a life long, severe rare genetic disorder called Harlequin Ichthyosis. Because Ichthyosis is a life-long condition, and because there is no cure, the goal of treatment is to alleviate symptoms and relieve pain/discomfort. Despite what the Dr. Said, (he would be stillborn) I delivered Jamison. He came out crying and I knew he was going to fight. While in recovery, I kept asking to see him. He was alive! Minutes felt like hours, my nurse assured me soon. Soon did not happen until two days later because I was rushed back into surgery, having 4 1/2 blood transfusions, and then in the ICU. All I could do was look at pictures of him, I so badly wanted to take away his suffering. To tell him God’s angels are surrounding you! When I was more stable nursing staff helped me into a wheel chair, I was finally going to meet my miracle baby!I broke down when I saw him- tears of joy, fear, hope, grief, that moment will always be in my heart. He was so tiny -4lbs 2 oz born 6 weeks early. My heart broke into a million pieces over and over. I wanted to hold him and tell him it’s going to be ok. Those were really hard days, weeks, months. It was so isolating, exhausting, & scary. Not knowing God’s plan but learning to trust in it, was hard.Everyday he was getting stronger than the last, and proving doctor’s wrong. Jamison is the strongest, bravest, little boy I have ever met. He overcame many challenges, and continues to do so. God had his angels surrounding him from day one. Here we are almost a year later and my boy is still stumping specialists left & right. It is so rewarding watching him overcome many challenges, and planning his first birthday! He still requires around the clock care- that includes skin care-every 2 hours he has aquaphor applied head to toe and his entire body is examined for any sign of a skin infection, every 2 hours his temp is checked (due to overheating), 2 -1 1/2 hour baths daily, 2 -hour long bleach baths weekly, eye care, respitarory care 5x/day, physical therapy 3 hours/day, occupational therapy, speech therapy, the list goes on. And I am given my endurance everyday by God. We live a very busy lifestyle. Jamison’s needs require we keep a tight schedule and manage our time well, which leaves us with little wiggle room to just breath. I have strong faith every day to keep on pushing asking God to carry us all. We are a low income family, doing the best we can with what we have everyday. The disorder is so rare Jamison is 1 out of 100 approximetly in the U.S. living with Harlequin Ichthyosis. Which leads me to the reason behind this page, every year there is a national conference for those affected with Ichthyosis. A time for creating life-long relationships, support, education, and hope. This year the conference is in Nashville. We cannot afford the total cost to go, it would be a life changing event for Jamison, myself, and Kolton to attend. I hope to have this expierence to gain more insight on how to care for Jamison and meet his needs better, build new relationships with families who understand, and bring back what is learned to his specalists/providers so we can give Jamison the best life he deserves in working together for him. Please, help us get to Nashville. <3
Organizer
Alicia Kay
Organizer
Mead, WA