Hi my name is Kendra. I met Ryders amazing family at primary childrens hopsital. I have never met such a strong family and my heart breaks for them as i watch all they have had to endure. Having a medically fragile child is more expensive then just medical bills (which by the way are daunting). Its all of the little things that add up, driving the hour to primary childrens everyday. Meal after meal in the hospital cafeteria, trying to still have some sort of normalcy with there other 3 children. Then you add in all of the medical bills, oxygen, feeding tube supplies, medications, the list goes on and on. I am starting this site in the hopes to help this wonderful family relieve some of the debt they have accrued since beautiful baby Ryder was born. Please share, send prayers and if you can and would like to, donate.
here is Ryders story as told by his mom
Ryder was born Dec. 2, 2013 and diagnosed with a severe Congenital Heart Disease called mitral valve and tricuspid regurgitation and stenosis. He also has broncho and tracheomalacia, which means his airways collapse when he breaths. Not only is his heart sick, his lungs are weak too. At two months old Ryder underwent his first open heart surgery to try to repair his mitral valve. The surgery was unsuccessful as they discovered he had no leaflets within his valve. We then made the difficult decision to go forward with an experimental and high-risk surgery to replace his mitral valve. It had never been performed at our hospital before, but our surgeon had researched it and felt confident he could do it. About a month later Ryder had his second open heart surgery. The surgeon was able to successfully remove his mitral valve and replace it with what is known as a melody valve. After recovery and over 100 days in the ICU we were finally able to go home. Two months later Ryder ended up back in severe heart failure due to his melody valve blocking his aortic valve. After an unsuccessful attempt to adjust it in cath lab Ryder underwent his third open heart surgery in his short six months of life. The surgery was very risky and although the medical team was hopeful his outcome looked uncertain yet again. The surgeon was again successful and Ryder is currently recovering from this procedure.Although he has had MANY scary moments in his short life, the thing keeping us going is the prospect that he does have a promising future ahead of him. Once he is big enough he will need a more traditional valve put in.