Help Save Owen Link’s Life

HELLO!!! My name is Owen Link Bobo and I am excited to almost be 9 months old! I know my parents and my sister are just as excited as I am! Recently, I heard mommy and daddy say that I am really sick and my heart is starting to fail because there is too much pressure on one side caused by my arteries being too small. That is why we are leaving Texas and driving to Stanford in California to have a SPECIAL LIFE SAVING SURGERY inside my lungs that will give me bigger arteries and relieve the pressure inside my heart. My mommy and daddy need help with the costs associated with my care that my insurance does not cover.

Me during my visit with the Chief of Congenital Heart Surgery at Texas Children's Hospital; 8 months old; October 10, 2018, #LegendofOwen 


~ WHY DO I NEED SURGERY? ~

Because I WANT TO LIVE a long life with my family! I am just about 9 months old, but already have a crazy story to my life. I guess the first thing is that I have Williams Syndrome, which is a rare genetic deletion of unknown cause that creates physical and mental challenges. It is because of Willliams Syndrome that my aorta and pulmonary arteries are too small, which then makes my heart have to work harder, and because of this, the right side of my heart is starting to fail. My doctors say the medical terms are Supravalvular Aortic Stenosis (SVAS), Supravalvular Pulmonary Stenosis (SVPS), and Peripheral Pulmonary Artery Stenosis (PPAS). I need surgery to correct my PPAS, by performing multiple arterial bypasses inside my lungs, which will decrease the pressure inside my heart. My doctors at Texas Children's Hospital in Houston believed that they could perform a surgery to save my life, and mommy and daddy trust them with such an extraordinary task because they already performed LIFE SAVING SURGERY once before. This time though, they do not have a way to fix me, and I can tell that it scares my mommy and daddy.

I was Oxygen Dependent until I was 7 months old, but that never kept a smile off my face! Here I am 2 months old; April 10, 2018, #LegendofOwen 


~ WHY DO I HAVE TO GO TO STANFORD? ~

My team of doctor's at Texas Children's Hospital are very skilled and can do surgery to correct my SVAS and SVPS, but they currently do not have a treatment for my Peripheral Pulmonary Artery Stenosis (PPAS). Not too long ago, my diagnosis was a death sentence for infants, but thanks to a team of physicians at Stanford Children's Health in California who have developed a technique to bypass the arteries inside the lungs, I MAY HAVE A CHANCE TO LIVE! That is why I am being referred to the Pulmonary Artery Reconstruction Program  at Stanford. The surgery is extremely laborious and demanding, therefore, there are strict criteria that must be met to justify the risks and stresses caused to the patients body. Because of this, the surgery is only performed twice per year on average.

Mommy and daddy just gave me a bath; I love getting baths! 7 months old; September 18, 2018, #LegendofOwen 


~ HOW LONG WILL I BE IN THE HOSPITAL? ~

At Stanford, I will be admitted for an estimated 14 days. Before I can go to Stanford, I will need to have a diagnostic catheterization performed at Texas Children's Hospital, which means I will be admitted for 3 days to safely undergo the procedure. My cardiologist says that some infants are only in the hospital for the catheterization and leave that same day, but because of my Williams Syndrome, any time I am given anesthesia, there is a significantly higher risk of my heart stopping. Mommy and daddy are worried about this, but I’m not scared! It will not be the first time for me to be put under anesthesia, and it is certainly not my first time to be in the hospital!

One of my first pictures while in the NICU at Houston Methodist Baytown; 1 day old; January 26, 2018, #LegendofOwen 


~ HOW YOU CAN HELP! ~

GIVE  whatever you can. No donation is too small and ALL donations will make a huge difference.

SHARE  this page on social media - GoFundMe.com/LegendofOwen 

PRAY  for me and my mommy, daddy, and sister through these strange and difficult times. 

Me enjoying playing with mommy, daddy, and my sister in between appointments; 7 months old; September 17, 2018, #LegendofOwen 


~ HOW WILL DONATIONS BE SPENT ~

Total Estimated Expense is $11,350

Texas Children's Hospital for pre-op testing: $150

· Fuel - $30

· Meals - $120 @ $40/day

Stanford: $11,200

· Fuel - $960 @ $80/fill-up

· Lodging - $4,800 @ $240/night

· Meals - $800 @ $40/day

· Clothing for Owen after surgery - $140 @ $14/outfit

· Insurance out-of-pocket - $4,500


One of several EKG's I had over the past few weeks; I like to pull on the cords! 8 months old; October 16, 2018, #LegendofOwen  


~ A SUMMARY OF MY JOURNEY SO FAR ~

Since I was born, I have been admitted into the NICU for 12 days, the Intermediate Cardiac Care Unit for 6 days, the Pediatric ICU for 7 days, and I have also had over 50 medical appointments. My last admission was to have a Left Upper Lobectomy, which means that the top half of my left lung was removed. This was done because I have another rare condition of unknown origin that is called Congenital Lobar Emphysema (CLE). CLE causes the lung tissue to continue to inflate until it compresses the other structures in the chest, such as the heart, blood vessels, and the other lung.  It turns out that my doctors found only 2 other cases in the literature of a child with both Williams Syndrome  and Congenital Lobar Emphysema (CLE) . My mommy and daddy tell me that I don't have to be so rare! After the lobectomy, my doctors say that the other parts of my lungs appear unaffected, but they will have to continue to monitor me as I grow.

My toys watching me sleep while I suck my pacifier named Bingo after my lobectomy; June 29, 2018; 5 months old, #LegendofOwen 


Three days after being released from the hospital from having part of my lung removed; 5 months old; July 4, 2018, #LegendofOwen 


My mommy and daddy have been with me every day of my life and they have always been at my bedside when I am in the hospital. I want them to be with me during every moment as I get ready for my SECOND LIFE SAVING SURGERY.


Thank you all for your compassion as you read my story and for giving what you can to help us during my life saving medical adventures!!!


Taking a nap with Bingo, my pacifier; 8 months old; October 13, 2018, #LegendofOwen  


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