It Takes a Village
Donation protected
Those who know the Castillote family understand that when you meet Sabrina, you immediately become a treasured friend and have a place on her prayer list. You know that Reiff is consistently there through his acts of service in photography, technology, and strong support for those in need while in the background. Malachi’s smile is constant and takes up half of his face, he is always positive. Azriel is witty, charming, stylish and a committed friend. Maleea is a beautiful mixture of her parents in her own way - quiet and supportive of loved ones by just being present, but can also be outgoing through fits of laughter with her family and friends.
In knowing the Castillote family you likely also know that they have had an ongoing battle managing through different health issues across their little family. Recently they have learned, after years of testing and inaccurate diagnoses, that Malachi has a rare terminal genetic disease called CLN2 (Batten's Disease). This is so rare that they have been told there are only about 100 cases in the world. As they started to process this news, inform family, and start to understand the process of what was to come next a week later they were hit with another blow ... that all these years they have been fighting to keep their little girl Maleea functioning with medical issues of her own, she too had been confirmed with a diagnosis of this same Terminal disease. They are devastated, overwhelmed and in shock that 2 of their 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, just 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.
Both Malachi & Maleea will require brain surgery to place a reservoir port (Omaya) underneath the scalp that leads directly into the middle of the brain, this will allow for them to receive bi-weekly enzyme medication which has been recently approved by the FDA to help in slowing these life-impacting symptoms. The closest team of doctors that specialize in this rare disease and offer these surgeries and treatments are in L.A. Orange County Children's Hospital. There are families currently in L.A. getting this treatment and waiting for us Castillote's arrival with open arms and to help support us emotionally. The plans to fly to California is now in the works, and our lives have been changed forever. Essentially 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 Oct 20th and returned home 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 provide; including 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, where our support is.
If you know the Castillote family, they are a just a “roll with it” type of family. They move with the ups and downs and just make things work. They also do this while being in constant service to others in their family, group of friends, and community. This has hit their family HARD, and sharing with two kids about what is going to happen is overwhelming for any parent. Today, they need support from us. Whatever you can provide will help.
Thank you on behalf of the family
In knowing the Castillote family you likely also know that they have had an ongoing battle managing through different health issues across their little family. Recently they have learned, after years of testing and inaccurate diagnoses, that Malachi has a rare terminal genetic disease called CLN2 (Batten's Disease). This is so rare that they have been told there are only about 100 cases in the world. As they started to process this news, inform family, and start to understand the process of what was to come next a week later they were hit with another blow ... that all these years they have been fighting to keep their little girl Maleea functioning with medical issues of her own, she too had been confirmed with a diagnosis of this same Terminal disease. They are devastated, overwhelmed and in shock that 2 of their 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, just 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.
Both Malachi & Maleea will require brain surgery to place a reservoir port (Omaya) underneath the scalp that leads directly into the middle of the brain, this will allow for them to receive bi-weekly enzyme medication which has been recently approved by the FDA to help in slowing these life-impacting symptoms. The closest team of doctors that specialize in this rare disease and offer these surgeries and treatments are in L.A. Orange County Children's Hospital. There are families currently in L.A. getting this treatment and waiting for us Castillote's arrival with open arms and to help support us emotionally. The plans to fly to California is now in the works, and our lives have been changed forever. Essentially 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 Oct 20th and returned home 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 provide; including 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, where our support is.
If you know the Castillote family, they are a just a “roll with it” type of family. They move with the ups and downs and just make things work. They also do this while being in constant service to others in their family, group of friends, and community. This has hit their family HARD, and sharing with two kids about what is going to happen is overwhelming for any parent. Today, they need support from us. Whatever you can provide will help.
Thank you on behalf of the family
Organizer and beneficiary
Sabrina C
Organizer
Bothell, WA
Sabrina Castillote
Beneficiary
