Welcome to our CaringBridge website/Blog! (UPDATED June 2020)
Knowing our family, you likely also know that we have had an ongoing battle managing through different health issues across our little family.
Recently we learned (Sept 26, 2019 ), after years of testing and inaccurate diagnoses, that our oldest son Malachi has a rare terminal genetic rare disease called CLN2 (Batten's Disease). This is so rare that we have been told there are only about 100 cases globally and 40 in the US being treated currently. Malachi is now officially the oldest getting treatment. As we started to process this news, inform family, and start to understand the process of what was to come next a week later, we were hit with another blow ... that all these years fighting to keep our little girl Maleea functioning with medical issues of her own, she too was confirmed with a diagnosis of this same terminal rare disease of Batten's Disease CLN2 (Oct 3, 2019). We are devastated, overwhelmed, and in shock that 2 of our 3 kids have this rare disorder. CLN2 is a disorder that affects cells in the brain. The disease is associated with the buildup of materials inside brain cells. Over time the buildup damages cells, and things stop functioning normally (speech, walking, seizures, vision, swallowing, to name a few), and these things lead to premature death in the late teens to early 20s. As of today, there is no cure, and there are no local resources. This disease is progressive and severe.
Malachi & Maleea required brain surgery to place a reservoir port (Omaya) underneath the scalp that leads directly into the middle of the brain; this will allow them to receive bi-weekly enzyme medication FDA has recently approved to help in slowing these life-impacting symptoms (it will take 2 years and 8 months + of infusions before starts to slow the progression). The closest team of doctors that specialize in this rare disease and offer these surgeries and treatments are in Orange County Children's Hospital California. There are families currently in California at CHOC. getting this treatment and waiting for us Castillote's arrival with open arms and emotionally supporting us. The plans to fly to California is now in the works, and our lives have been changed forever. Practically we will live there for the next 3-6months. The logistics are being worked out and moving SO fast. Our next appointment is Oct 15th, and they are most likely heading to California within a week and 1/2. UPDATE - WE ended up flying to California on Oct 20th and returned home on Dec 29th, with bi-weekly flights /trips back to California for brian infusions.
Insurance will help cover the standard medical costs, but there are so many needs above and beyond what insurance can't provide; including pre brain surgery deductibles, travel, meals, medication, hotel stays, car rentals, rental coverage while we are gone, leaving WA our home to live at the Ronald McDonald House in the OC when available, limited PTO from work, the list can be endless as there will be future needs as they start to lose abilities. The desire is to get this hopefully life-saving treatment, get established with the CHOC team of experts, and return back to our home in WA.
If you know our Castillote family, we are a just “roll with it” type of family. We move with the ups and downs and make things work no matter how hard the struggle. We continue to carry on life while being in constant service to others within our own family, group of friends, and our community. This has hit our family SO HARD, and sharing with two kids about what will happen and explaining the thought of brain surgery is overwhelming for any parent. Sharing their journey via this caring bridge will leave memories for Maleea & Malachi and our entire family. Expressing and sharing our journey can hopefully help other families diagnosed with this horrible rare terminal disease, and we accept them with open arms.
We have been blessed with generosity through our GoFundMe page (
https://www.gofundme.com/jvehe9-it-takes-a-village), meals provided while constantly traveling, prayers offered, and want to do our best to keep our loved ones posted while making that process as straightforward as possible through one method. We will update this site often as we can to keep family and friends updated on how we as parents are doing and how Maleea and Malachi are progressing through this journey.
The Castillote's
