Ride to Give - Braden the Brave
$30,022 Raised
107% of $28k goal
1653 contributors
0 days left
Ended Mar 22, 2014
Braden Knebel is an adorable 4 year old with Restrictive Cardiomyopathy and Noonan Syndrome. Please help us ease his family's financial burden as Braden faces an inevitable heart transplant. More ...

Braden Knebel is an adorable 4 year old with a heart of gold. Looking at his infectious smile you'd never know that his golden heart could stop beating at any time. He has been through so much, yet is happy and silly, and just as cute as can be. He is adored by his parents Matt and Michelle, and his big brother Carder. Here is his story:

December 7, 2009: Braden is born after an in utero diagnosis of Coarctation (narrowing) of the Aorta (CoA). He seems fine and is sent home.

December 14, 2009: Pediatrician cannot find palpable pulses in Braden's legs during routine check up. EKG and Echocardiogram confirm the CoA is present and that Braden needs surgery, immediately.

December 16, 2009: Braden has his first heart surgery. The CoA is repaired. The surgeon also repairs his Hypoplastic Aortic Arch, leaving Braden with no artery in his left arm. He struggles post op and spends days on a ventilator before slowly recovering.

December 23, 2009: Braden goes home in time for Christmas with a Nasogastric tube for feedings because he is to weak to take a bottle.

January 4, 2010: Braden is rushed to the hospital and he is diagnosed with VSDs in his heart also known as Swiss Cheese VSDs. These are small holes in the wall of the heart separating the lower ventricles.

January 12, 2010: Braden undergoes his 2nd surgery and receives Pulmonary Artery band to help slow the blood flow to his lungs.

January 19, 2010: Parents Michelle and Matt take Braden home, but spend the next few weeks back and forth to the ER with Braden in respiratory distress. He is re-admitted to the hospital where it is discovered that Braden is micro-aspirating bits of everything he eats, along with reflux coming up from his stomach.

March 3, 2010: Braden has 3rd surgery, receiving a Nissen Fundoplication and a G-tube insertion. The Nissen Fundoplication wraps the top of the stomach around the bottom of the esophagus to tighten things up so nothing can come back up. He spends the next 9 months on oxygen. From March to July he is admitted and discharged from the hospital several times.

July 2010: Braden has heart catheterization to check things over. He and his family are blessed to avoid the hospital from August to November when he is strong enough to be removed from oxygen.

December 2010: Braden has 2nd heart catheterization, where it is revealed the Pulmonary Artery Band can be removed

January 11, 2010: Braden has 4th surgery (3rd heart surgery) where the Pulmonary Artery band is removed, an ASD is closed and approximately 6 VSDs are closed as well. 

April 2010: Another heart cath is performed. There he shows signs of (RCM) Restrictive Cardiomyopathy but no official diagnosis is made.

July 2012: Braden is sent to a heart transplant doctor. Michelle and Matt's lives are changed in an instant. Doctors not only confirm the diagnosis of RCM, but tell them their only option for Braden is a transplant. Braden continues to have routine heart caths. He sees his cardiologist every 3 months for an EKG and Echo to confirm he remains stable.

Along with the heart defects, Braden carries the clinical diagnosis of Noonan Syndrome, which causes abnormal development in many parts of the body. Some of Braden’s specific abnormalities include short neck, Telecanthus of the eyes (distance between the eyes is abnormal), anteverted nares (tipped up nasal openings), subglottal stenosis (narrowing of the airway) and reflux to name a few. He has hypotonia (low muscle tone) which has caused significant delays in his development. He has worn supramalleor orthotics since he was one.  He has moderate speech delay, specifically articulation which is less than a 2 year old. He also has an oral aversion and moderate sensory integration.

Michelle and Matt try their best to help Braden understand what's going on so he isn't fearful during appointments and procedures. Michelle writes, "Without a transplant, Braden’s heart will eventually shut down and he will die. We are living on borrowed time now. We live each day holding our breath but try to enjoy every moment we can with him. We ask for prayers to keep our son stable as long as possible. The doctors are projecting that Braden will be listed and possibly transplanted within three years from diagnosis but there is no way to know for sure. Whenever Braden’s body starts to give up, we will know it is time."

Ride to Give wants to help Braden and his family prepare for the inevitable. While he remains stable now, this will not always be the case. There will come a time when he will be listed for transplant and Michelle and Matt will likely be living in the hospital. In the meantime, Braden needs therapy toys and equipment to help with his physical therapy at home which will strengthen his arms, shoulders and back. He could also benefit from therapy toys and equipment for occupational and speech therapy to help with communication and his sensory integration. His long term needs include funds for expenses related to appointments, copays, medications, travel expenses and hospital stays.

Please donate and help us ease the financial burden of this sweet family so they can focus on their boys, supporting Braden as he faces an inevitable heart transplant and all that comes with it. You can follow Braden's story at facebook.com/beatsforbraden, and learn more about Ride to Give and what we do at www.ridetogive.com and facebook.com/ridetogive.

Activity highlights See all 1663
Follow this campaign to receive updates by email.

People just like you

People just like you have raised $88+ million for causes they and their friends care about.

Start your own campaign
Recent contributions