Prayers for Riley
Riley gained his Angel Wings at 9:08pm on Sunday May 13th.
He tried so hard but his little body could not fight off the infection that had spread. Kassidi, Brad, Hayley & Hayden are heartbroken.
Riley touched so many lives with his light. He had an amazing smile that brightened everyone’s day. Kassidi and Brad extend their heartfelt gratitude for the donations everyone has given to this go fund me. The money is now being used for final preparations and memorial.
Please continue to keep their family in your prayers. Your support means a lot to them. Thank you.
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Our Superhero Riley is currently fighting for his life and he needs your help.
He has defied the odds for 12 years however this time, the doctors are telling us his chances for survival are slim.
Many of you have reached out, asking how you can help.
Riley was born with DiGeorge’s Syndrome, heart defects, kidney failure and many other complications. He has had countless surgeries and procedures. He is the bravest boy we know. He always has a smile no matter what pain he is in.
Riley has the most amazing support system within his family.
Brad & Kassidi do everything they can to make Riley’s life as enjoyable as possible. Riley loves elevator rides and the teacups at Disneyland. Whenever Riley is feeling good enough they take him to Disneyland. They also take numerous trips up and down elevators just to see him smile. Riley’s sister & brother Hayley and Hayden love him so much. Hayley (10) reads to him and always makes sure he is entertained during daily Dr. appointments, tests, labs and procedures. Hayden (4) loves to make his brother smile.
Kassidi is employed by the state as Riley’s nurse.
A few years ago they were searching for a home care nurse and found that a qualified nurse with all the certifications and training needed to care for Riley did not exist. Kassidi went to dialysis training and obtained everything she needed to care for Riley. Unfortunately, whenever Riley is in the hospital, Kassidi does not receive a paycheck. Since there is hospital staff helping care for him she is considered “off the clock.”
Brad has great coworkers that have been helping cover his workload so that he can be with Riley right now. However, he is rapidly exhausting his paid time off. This is putting financial concern on the family.
Your donation will help them stay ahead of their bills and house payment.
We can not let them worry about losing their home! Any donation you make will help them stay by Riley’s side as he fights. Brad and Kassidi are the most loving parents. They work tirelessly every day. Please, let’s show them how much we care!
If you can’t make a financial donation
Riley has a P.O. Box where you can send cards, letters of encouragement or gift cards. Hayley and Hayden would love some encouragement too. Hayley is having a tough time with all of this.
Riley, Hayley & Hayden Tyler
31441 Santa Margarita Parkway #A-265
Santa Margarita, CA 92688
Thank you all for your continued prayers and support for Riley and his Family.
It helps so much seeing your comments and knowing you are there to help us through this!
More about Riley's fight...
The doctors had prepared us for the worst and didn't expect him to survive long after birth. Little did they know what a little warrior he was going to be. At 2 weeks old, he came extremely close to death when his main collateral artery shut down in the middle of the night.
We were called to come to the hospital at 3 AM and told to say goodbye. He was nearly gone when we arrived. The heart surgeon arrived shortly after and rushed him into surgery, but told us to say our last goodbyes because there was very little chance that Riley was coming back out of that operating room alive. The surgeon was able to place a central shunt and Riley fought his way back to us.
He had a G-tube and his first Peritoneal dialysis catheter placed at 4 weeks old and was supposed to start dialysis immediately after his discharge, but miraculously, his creatinine dropped immediately before he was sent home and we were able to postpone dialysis. He was admitted for a cardiac catheterization at 4 months old and when he came out, we noticed that his leg was freezing.
An emergency ultrasound revealed that his femoral artery had become completely occluded from the catheter. He was put on a continuous drip of TPA to try to save his little leg and, a few days later, he nearly bled to death. The PICU team could not get a line on him because he had lost so much blood and they finally had to cut his tiny arm open right there at the bedside to get a line in.
They spent days pumping blood, platelets, and clotting factor back into him. At 5 months old, Riley had his complete Tetralogy of Fallot repair and bilateral unifocalization, a 12+ hour heart surgery done by the amazing Dr. Frank Hanley at Lucille Packard Children's Hospital at Stanford.
At 1 year old, we tried to fly with Riley after he was cleared by Cardiology, and he became unconscious on the plane. The plane had to make an emergency landing and an ambulance rushed us to St. Louis Children's Hospital. An echo was done and we were told that we needed to get Riley back to Stanford immediately upon his return to California. When we arrived at Stanford, a cardiac cath was done and Riley was diagnosed with severe Pulmonary Hypertension.
We were told that he might even need a heart and lung transplant. He was put on Sildenafil to help with the hypertension. While we were there Stanford also started the kidney transplant workup and I tested as a great match for Riley, but the heart surgeon deemed him ineligible for transplant because of the condition of his heart.
We went home on medication and oxygen as needed. At 14 months old, he started showing signs of respiratory distress and we took him to our local Children's Hospital. They sent him up to UCLA via ambulance and he was immediately sent into surgery to get a new PD and hemo dialysis catheter. He started dialysis that day. Back then, Peritoneal dialysis made him extremely sick and he remained on hemo dialysis for about 2 1/2 years.
When he was 2 1/2 years old, he had his 3rd heart surgery, a Pulmonary valve replacement, up at Stanford. After this, he was reevaluated and deemed eligible for his kidney transplant. Unfortunately, by this time, he had developed antibodies against me and 100% of the population from all of the blood products he had received. This meant that he would basically reject any kidney that was put into him. In order to decrease his antibodies, he was given the drug Retuximab for some time.
This led to a decreased immune system and constant and severe bouts of sepsis. As a result of all of these blood infections, his dialysis catheter had to be replaced multiple times, and this led to the occlusion of all but one of his upper central veins/arteries. He was placed back on PD at 3 1/2 because he could not keep a hemo catheter without getting a severe blood infection. The week after his 4th birthday, we got the call that a kidney was available for him.
He got his kidney transplant, but devastatingly, the new kidney clotted off and died a few days later and was removed on the 7th day post transplant. During the removal surgery, his gallbladder was ripped open by the surgical clamps and the surgeons had to remove it too. A new PD catheter was placed, but the surgeon warned us that there was so much scar tissue in that area that it might not work (he also got a new hemo cath placed during the transplant).
Thankfully, Riley has been on Peritoneal dialysis for 8 years total now and it has worked so far. Riley ended up losing his last hemo catheter after that due to some major mess ups from Interventional radiology. An MRI/MRA/MRV several years later revealed that all of his central access is gone/occluded and he has no place to put another hemo catheter in the future. It also revealed that the kidney transplant clotting caused Riley's Inferior Vena Cava (the vein used to hook up a new kidney) to completely clot off too, and thus, Riley will never be able to get another kidney transplant.
He will remain on dialysis for the rest of his life, and the doctors have warned us that PD typically stops working after about 10 years, so we are very worried about how much longer we will have with him. He was on dialysis for 10 hours every night for 8 years, but tests recently revealed that it wasn't working as well anymore, and we had to increase it to 12 hours every night.
Thankfully, we have recently been given the approval to go back to 11 hours a night. Riley also has epilepsy and takes several medications each day to keep his seizures under control. He is completely G-tube fed and wheelchair bound. He used to walk, though not well, but he has developed severe lack of blood flow to the left leg and he can no longer stand or walk. Recently, we have started noticing color changes to his right foot too, which is what we first noticed with the left one.
Riley also has bad bone disease due to his lifelong lack of kidney function and he is very prone to breaks. Despite all of his medical problems and the trauma that he has gone through, Riley is the sweetest, most loving little boy, and he enjoys life so much.
He wants to get out and live life and make friends with everyone he meets. So, for as long as he wants to keep fighting, we will keep fighting for him.
We really appreciate all of you who have chosen to follow his journey and please keep our little boy in your prayers!!
