- U
- J
Dear Family and Friends-
As many of you know my sister Katherine and I are going to become Aunts again. We can not tell you how excited we are for our nephew to get here, but last Saturday we got some bad news from our brother, little RJ has Spinal Bifida. Monday we found out Ashlie is eligible for in-utero surgery at UCSF to stop any more nerve damage, reduce the chances for hydrocephalus by 40% and increase the chances that RJ will walk by 20%.
Our brother and sister-in-law are the most giving, kind, caring, loving people you will ever meet. They are always there to offer a helping hand or give to people in need. We are not able to take away their pain or anxiety or fears or honestly do much of anything but be there to listen, offer support and pray for them through this journey. Doesn't seem like much, when you want to do so much more.
So, even though we know they would never ask for help, we decided we would start a fundraiser to help at least ease the burden of the medical expenses, insurance will not cover and the cost of travel and lodging while they prepare to spend, at the very least, a month in San Francisco at UCSF.
Our big brother writes about their journey the best. Please see below...
On Friday April 3rd Ashlie and I went in for a routine 20 week ultra sound. We walked out with our world turned upside down; our son was diagnosed with Spina Bifida. This is a birth defect where the spinal cord does not close up in the early part of the pregnancy. The amniotic fluid that surrounds the baby causes damage to the nerves. This can cause paralysis, loss of bowel and bladder control, learning disabilities, and other various complications. Today we met with a spec...ialist for 3 hours, and he referred us as an eligible candidate, for a Fetal Surgery that would close up the lesion. This surgery would NOT correct anything, it would only prevent further nerve damage. The surgery has shown a 20% higher chance of a child being able to one day walk and improve their overall quality of life. It also reduces the need of a shunt (drain from the brain) by 40%.
There are great risks, but we really feel this is best for our son. This window to get this surgery small and because this is fairly rare, there are not many hospitals that offer this procedure, we will be going to University of California San Francisco (UCSF) on Monday. There will be 3 to 4 days of tests and consultations, then we would set the date within the next week. Ashlie would be hospitalized for 4 nights if all went well, and then would need to stay within San Francisco for 3 to 4 weeks.
Here is a blog I wrote for my family a few days ago. I will try to keep this updated during our journey.
http://nicksmithsfamily.blogspot.com
As many of you know my sister Katherine and I are going to become Aunts again. We can not tell you how excited we are for our nephew to get here, but last Saturday we got some bad news from our brother, little RJ has Spinal Bifida. Monday we found out Ashlie is eligible for in-utero surgery at UCSF to stop any more nerve damage, reduce the chances for hydrocephalus by 40% and increase the chances that RJ will walk by 20%.
Our brother and sister-in-law are the most giving, kind, caring, loving people you will ever meet. They are always there to offer a helping hand or give to people in need. We are not able to take away their pain or anxiety or fears or honestly do much of anything but be there to listen, offer support and pray for them through this journey. Doesn't seem like much, when you want to do so much more.
So, even though we know they would never ask for help, we decided we would start a fundraiser to help at least ease the burden of the medical expenses, insurance will not cover and the cost of travel and lodging while they prepare to spend, at the very least, a month in San Francisco at UCSF.
Our big brother writes about their journey the best. Please see below...
On Friday April 3rd Ashlie and I went in for a routine 20 week ultra sound. We walked out with our world turned upside down; our son was diagnosed with Spina Bifida. This is a birth defect where the spinal cord does not close up in the early part of the pregnancy. The amniotic fluid that surrounds the baby causes damage to the nerves. This can cause paralysis, loss of bowel and bladder control, learning disabilities, and other various complications. Today we met with a spec...ialist for 3 hours, and he referred us as an eligible candidate, for a Fetal Surgery that would close up the lesion. This surgery would NOT correct anything, it would only prevent further nerve damage. The surgery has shown a 20% higher chance of a child being able to one day walk and improve their overall quality of life. It also reduces the need of a shunt (drain from the brain) by 40%.
There are great risks, but we really feel this is best for our son. This window to get this surgery small and because this is fairly rare, there are not many hospitals that offer this procedure, we will be going to University of California San Francisco (UCSF) on Monday. There will be 3 to 4 days of tests and consultations, then we would set the date within the next week. Ashlie would be hospitalized for 4 nights if all went well, and then would need to stay within San Francisco for 3 to 4 weeks.
Here is a blog I wrote for my family a few days ago. I will try to keep this updated during our journey.
http://nicksmithsfamily.blogspot.com
Organizer and beneficiary
Nick Smith
Beneficiary