Jameson Setsma July 13, 2008 - March 3, 2009
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Although, we never had the chance to meet Jameson while he was here on earth, we know he is watching over Layla free of EB. We met Jameson's family 3 months after Layla was born and were blessed by a visit from his amazing mother, Melisa that has changed our lives forever. Please read more below about Jameson and his family (as told by Melisa Setsma).......
On July 13, 2008 our family grew from 2 boys to 3. I had the perfect pregnancy and the perfect delivery. It was not until I delivered Jameson that the world came crashing in on our family. Jameson was missing a significant amount of skin around his knees, ankles and wrists. Our OB said, "Melisa, I think there may be a problem with the baby.....I will go to the NICU and I will come back with some answers for you." Our Doctor came back with these words..... Epidermolysis Bullosa. Those words meant absolutely nothing to us at the time. As we tried to understand what was happening, we came to realize that our baby was very special! He had a disease that only 1 in 50,000 (in 2008 4 million babies were born in the US and 46 had EB) babies a year are born with. We also came to understand that not many doctors, nurses or medical staff had heard of the rare disease.
This lead us to dEBra. WOW! We were now on the road to being able to care for our baby. dEBra knew how to answer all of the questions that we needed answered. The care and concern for us and our baby from the dEBra Foundation gave us the direction and the knowledge to care for our baby. Jameson was diagnosed with a type of EB known as Simplex . In very rare cases of Simplex there is a 5% chance of internal blistering.
On a few occasions Jameson would have severe breathing issues and the ambulance would race us to the emergency room for in depth breathing treatments. The first two times this happened they kept us overnight and released us the next day after he stabilized. The night of Feb 20, 2009 was different, a very painful, heart wrenching night. The team of doctors at Arnold Palmer Children's Hospital worked on Jameson for hours to no avail. After they came and got Todd and I they informed us that Jameson was without oxygen for 17 minutes before they were able to get him onto a ventilator. They did everything they could for him, but the severe internal blisters of EB had taken our son.
After 13 days on a ventilator Jameson went home to be with Jesus. We have never experienced anything so trying in our lives, but we are not defeated because we have hope. We know without a shadow of a doubt that our baby boy is now healed and in heaven with the Savior. God knows exactly how we feel because He lost his Son too. In fact, He gave his Son up for us so that we may have eternal life. That's true love!!!
For more on our story you can visit jtsetsma.blogspot.com
