David's Medical Trip Fund

We are asking for donations to make it possible for us to take our son David to Mott Children's Hospital in Ann Arbor, Michigan for a second opinion with a surgeon who specializes in David's rare lung condition. The plan is to have his lung removal surgery there. This will require at least 2 trips to Michigan. We will have to drive each time because David's pulmonologist said that his lungs are too fragile to safely fly in an airplane. The funds raised will help cover the costs of travel and the portions of medical expenses that insurance won't cover.

David was born 3 months early in May despite his due date being in August. His twin brother had passed away in utero a month prior to his birth. David weighed only 2 lbs and 6 oz.!

David faced a lot of issues right after birth. The NICU team had to resuscitate him. When they got him up to the NICU, they learned that he had a collapsed lung on the right and had to place a chest tube that would be there for a few days. He also was intubated and on a ventilator. On his fourth day of life, they gave us some horrible news, David had bleeding in his brain. They offered for us to take him off of life support and make him comfortable until he passed or to allow him to continue on. My husband and I had no doubt in our mind that we were going to keep him alive and provide him the best life possible. They told us that David could turn out anywhere from a blind and deaf in a vegetative state to just needing minor help in school, or anywhere in between.

We faced a long road from there! They noticed on his chest x-rays that there was something wrong with the left upper lobe in his lung. When he was finally stable enough, they did a CT scan of his lungs. This is when his congenital lung problem was found. He had what is called Congenital Cystic Adenomatoid Malformation (CCAM). It is an extremely rare condition and is essentially a large cyst or multiple small cysts within the lung. David has a whole bunch of cysts, probably close to 30! We were told by the NICU doctors and a pediatric surgeon who was consulted on it that he would eventually need that part of his lung removed.

In the meantime, David still continued to fight for his life in the NICU. His brain bleed did not resolve on its own and it caused hydrocephalus. We were told that once he reached 2 kg in weight (double his birth weight) then he would need surgery to place a VP shunt. In the meantime the started with doing spinal taps to relieve brain pressure until he could no longer tolerate them (it was a huge set back, back on the ventilator and very critical condition) where they switched to doing fontanelle taps in the soft spot on his head. He even started having seizures as a result of the pressure.

On July 6 (his big sister's first birthday), he underwent brain surgery to have his shunt placed. A device he would need for the rest of his life and brings it's own risks of infection at any point or failure. He had complications from the surgery and was back to being in critical condition for a few days.

He slowly started to get better and improved. The only area he struggled in was feeds. As it got closer to his due date the doctors mentioned the possibility of needing a g-tube for him to go home on so he could be fed enough formula. On August 8, David underwent surgery to have his g-tube placed. He recovered well from that and daddy and I needed to learn how to use the g-tube.

On August 15, I was over the moon excited to be able to bring him home! After 96 long days in the NICU, David no longer needed to be in the hospital! It was not the end of his problems though. He has had to be seen by an ophthalmalogist, pulmonolgist, G-I doctor, cardiologist, neurosurgeon, and pediatric surgeon on top of his normal pediatrician.  He has since been cleared from needing to see the cardiologist but still see all the other specialists. He also receives physical therapy to help him improve on his motor skills. He will soon be seeing an occupational therapist and is taking a break away from his speech therapist for a little while.

His pediatric surgeon who has been following him for his CCAM has told us that he will need the left upper lobe of his lung removed at some point over the next few years. We have to find a delicate balance between letting David get big enough, strong enough, and healthy enough for the surgery but also not waiting to long as it has the potential to turn into cancer. We want to take David to a bigger hospital that has a lot more experience with this condition for a second opinion and eventual surgery. We want the second opinion to make sure we are doing exactly what he needs but to also make sure it is done by a surgeon that does more than 1 a year if they are lucky and at a hospital that has a post-op care team that knows what to expect during his recovery phase.

With me being a stay at home mom with David, the trip will be extremely difficult for us to afford. I am not able to return to work to help provide money for the trip because David needs too much care and attention. Additionally, David's immune system is too weakened to attend day care. Any little bit you can donate would be very much appreciated and would help greatly with getting David to Mott Children's Hospital in Ann Arbor, Michigan for the care/treatment he needs for his lung. Thank you!!


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Adriana Waldon 
Syracuse, NY
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