Dear Family & Friends,

As most of you know, Claire and Luke’s 2-year old son Rilo became ill early November with flu-like symptoms. He was extremely sick and just couldn’t manage to get better. Lots of doctor visits and multiple trips to the ER didn’t seem to help and finally, on November 21st, Rilo was transported from San Luis Obispo to Fresno via ambulance. He coded twice at Valley Children’s Hospital and was thankfully brought back. He spent a week on an ECMO machine (life-support) that acted as an artificial heart-lung to give his little body a chance to rest and recover from the strain the illness placed on his heart. He continued on a ventilator once he was strong enough to be taken off the ECMO machine. He was thankfully taken off the ventilator and started to regain strength on his own.

The medical team at Valley Children’s Hospital was wonderful but they felt that Rilo’s progress had plateaued. They made the decision to move him to Stanford Medical Center where there is more specialized cardiac care to address Rilo’s heart failure.

Over the course of this ordeal, Rilo’s medical team discovered that he has Barth Syndrome, an incredibly rare, life-threatening genetic disorder that affects all the cells of your body through mitochondrial disruption. The syndrome can compromise your immune system and cause heart failure which is what happened in Rilo’s case. They now have an explanation as to why Rilo fell so terribly ill. Fortunately, he qualifies to participate in the case-study for a recently-approved FDA drug that should manage this syndrome as Rilo grows older.

As we know, our country heavily relies on fundraisers like this one to subsidize our medical system. Claire and Luke have been a one-income family since Rilo’s arrival. Luke is fortunate enough to have employers who have been understanding through this difficult time but he hasn’t worked in a month. The family will be facing the uphill battle of a new normal including daily medication for Rilo, a BIG change in routine, and the unknowns of future costs/therapies/doctor visits, etc. Medical bills have obviously added up, general living costs have not paused, and the new year brings a new deductible to meet so we’re setting up this GoFundMe. Hopefully we can band together and send them a little love to help ease the financial burden this ordeal has placed on their family.

THANK YOU so much to everyone who has sent messages of love and support to Claire, Luke, and Rilo! They appreciate it more than you know. And THANK YOU in advance for your generosity as they navigate this challenging time. Any contribution is appreciated and please feel free to share this page far and wide!